THE MUSE â&#x20AC;¢ SPRING 2017
CONTENTS 03 FROM THE EDITOR 04 CLOCKS I ALMOST SAID
05 (IT’S OKAY TO CRY) ART WITH HEART: EVA
06 MARKVOORT’S LEGACY THE FOUR HUMOURS
08 REVISITED 06 ART WITH HEART
09 IT TAKES ONE SONG 10
OUR HEALTH DEPENDS ON THE STORIES WE TELL
21 ART FOR ALL
MUSIC THERAPY AT
13 THE END OF LIFE 15 OFFICE ART
18 OF LOVE AND HOME 20 DANCE WITH ME 21 ART FOR ALL 10 OUR HEALTH DEPENDS
23 DIAGNOSTIC DILEMMA 24 DRAWING WISDOM
27 SILENT WOUNDS
27 SILENT WOUNDS 28 THERAPEUTIC CLOWNING 30 RADICAL MASTOIDECTOMY SOUND BODY, SOUND SPIRIT,
31 SOUND MIND
33 ONTOLOGY OF EMPTY 34 STAFF 13 MUSIC THERAPY
28 THERAPEUTIC CLOWNING
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FROM THE EDITOR
as I read, I began to realize that the essence of medicine was not a highly sophisticated grasp of anatomy and physiology or nerves of steel in a high-adrenaline emergency scenario, but human connection. Depth and diversity of perspective constitute the heart of healthcare. They enable nuance, as opposed to absolutism, which in turn disrupts the misguided and, frankly, harmful idealization of the healthcare professional. In founding The Muse, I wanted to provide an inclusive platform for narratives told through a variety of media that are as real and raw as the stories that inspired me. The theme of this issue, Beneath the Surface, is an invitation to join us in this exploration of the unseen and unconventional.
This coming June marks the two years that have passed since the idea of The Muse first occurred to Dear reader, me. This issue, our fifth, marks my last as EditorIf there is one thing that I have known since I was in-Chief. The Muse is what I wish I had available little, it is that there was no chance that I would to me when I matriculated. It is not nearly enough, ever be a healthcare professional. Like many by any means. I hope to see integration of the others, I always had a considerable respect for the medical humanities into the curriculum, by way of field, but it just did not seem right for me. As a courses and eventually, a minor. But it is a start budding writer, I was fascinated with flaws and and, for many involved in the initiative, it has been the gritty dynamics of human relationships. In my their first exposure to the medical humanities. In eyes, the clinician was an embodiment of sterile their emphasis on diversity of perspective and reflection, the medical humanities have helped perfection. me find my way. I can only hope that it will help Enlightenment came the only way it could -- through others in the same way. storytelling. Honest and profoundly vulnerable narratives by writers like Frank Vertosick, Paul A final thank you to all of the staff and our faculty Kalanithi, Atul Gawande, and Danielle Ofri gave advisor, Dr. Amster. I cannot express the depth of me a glimpse of something more than clinical my appreciation and gratitude for the unwavering diagnoses. They wrote of the inevitable fractures faith and support from all of you, especially those in the mantle of perfection they were convinced who have been there from the beginning. Thank that they had to maintain. They wrote of patient you. Take care, experiences that caused frustration, grief, and joy in turn. They wrote of the day-to-day ritual of checking on patients, interacting with family and colleagues and mentors, building relationships, of Anna Goshua all of the seeming minutiae that not only shaped Editor-in-Chief their goals and careers, but their identities. And THE MUSE â&#x20AC;˘ SPRING 2017
BY ANGELA HU ART BY AMY AJAY
===== Begin Scene ===== I walk into the room along with another medical student and our preceptor, a home care nurse. The patient’s wife greets us cheerfully, welcoming us in as if we were old friends. Outside, the hallway of the retirement home looks musty and old, but inside, the apartment is bright and clean – a refreshing change. Handmade trinkets, embroidered flowers, and scriptures adorn the shelves and walls. A lace handkerchief has been artfully crafted into a serene-looking angel. We reach the living room, and sit down on the floral loveseat. Across from us is who we have come to see: a man grasping the edge of the sofa, quietly wheezing. He is cachectic, dressed in his pyjamas, with his thin strands of hair matted to his scalp. His voice is raspy as he tells us of his increasing difficulty with breathing. Visibly tar-stained nails peek out from below his sleeves.
We discuss his medical issues and his palliative care. He tells us that he is tired and that he can no longer hold on anymore until his grandchild is born. I look at the ground in discomfort. The clock chimes and I jump. Eleven strikes, the penultimate hour. The chimes seem never-ending. Glancing around, I count at least three more clocks. Their ringing is cacophonous and the ticking ceaseless. I look back to the patient. He is clearly in much discomfort and the nurse suggests going to the hospital to receive oxygen. He solemnly agrees. His wife gets up and starts preparing his belongings. She fusses around the house, making sure nothing is forgotten. She retrieves his health card and he shows it to us. The picture was taken three years ago, showing an altogether different man with plump cheeks and a healthy complexion. We see his do-not-resuscitate form, signed, dated, and stamped.
At last his wife has finished gathering everything. We place the 911 call for an ambulance. The dispatcher is calm and business-like, telling us the ambulance will be here any minute. We sit and wait. The clocks continue ticking. We hear the sirens coming down the lane. A crew of burly firefighters walk in, filling up the small space. Next come the paramedics, with their purposeful stride and immediate delegation of tasks. The patient is fitted with an oxygen mask and eased ever so carefully onto the stretcher. The clocks chime again – twelve strikes. The wife hands over the keys and hurriedly tells us to lock up after ourselves when we finish. I accompany her to the door I wish to embrace her, but awkwardness overcomes me. Instead, I grasp her hand as she leaves. “Pray for us,” she says, and I smile weakly. “I will,” I say, closing the door. ===== End Scene =====
ABOUT THE AUTHOR - Angela Hu is a McMaster University medical student of the Class of 2018. Her piece, Clocks, was selected as the winning reflective submission of the MacMad Placebo Blog Writing Contest.
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I Almost Said (It’s okay to cry.) By Michal Coret Art by Kelly Dong
The visitor’s chair had sheets on it So I sat down on her walker. I asked what I always ask first (How is your day going?) She said what she always says first (It’s okay) Then she added (But my sister didn’t show up. She was supposed to visit me.) I try to make her feel better (I’m sorry. She’ll visit soon? Maybe one of your other siblings can visit too?) The woman in front of me burst into tears on the hospital bed. (She’s the only one that visits me.) She wiped the tears with her hand still underneath her sheet. I shift closer. I am sitting on her bed. She is sobbing with her mouth open. Her tears fill the bags beneath her eyes. I bring her a tissue and the skin sags with each dabbing. The IV tube blocks her hand from mine (It hurts; they just put it in a few minutes ago. The nurse had bad fingers.) I remain seated without much to say. ( ) Doctors walk by.
ABOUT THE AUTHOR - Hi, thanks for reading The Muse! My name is Michal and I’m a third year Bachelor of Health Sciences student at McMaster University. I love used books, reading and writing poetry, playing music, over-thinking, drinking coffee, swing dancing, and... much more.
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Art with Heart
Eva Markvoort’s Legacy Eva Markvoort was a young woman who inspired millions with her love; first with her own blog, then as her life story unfolded in the documentary 65_RedRoses, and finally through the legacy campaign she co-created with her own artwork. At only 23 and struggling with cystic fibrosis (CF), Eva started blogging on LiveJournal as she waited for a double-lung transplant. Reaching out online is incredibly important for those living with CF, who are often isolated from others because they are sick and susceptible to infection. Eva’s online community formed a huge part of her support network on her journey. 65_RedRoses was co-directed by Eva’s friends, Nimisha Mukerji and Philip Lyall, who had their cameras
rolling at the dramatic moment that her pager sounded, marking the end of her wait for a double-lung transplant. They were also granted complete access to her subsequent transplant surgery. After her transplant and shortly before the documentary film launched, Eva and then medical student and photographer Cyrus McEachern collaborated on an image for a heart-themed photo contest (Heartfelt Images) held by his cardiology professor, Dr. Carol Ann Courneya. “Heartfelt Images started in 2000 after I had been to a medical education meeting where I went to a session that was entitled “The Use of Photography and Critical Thinking.” And I thought, I won-
der if I can bring that idea back and when I’m teaching medical students about the heart, give them the opportunity to use a camera and conceptualize the heart artistically. I’m a photographer, just amateur, purely amateur, but I have always loved photography and I think visually and I learn visually. So, it made perfect sense to me.” ~Dr. Carol Courneya, Associate Dean of Student Affairs and an Associate Professor in Cardiovascular Physiology The first series of images Cyrus and Eva created was called Piece of Heart. These stunning images of a heart were painted by Eva, who used her own body as a canvas, and were photographed by Cyrus. As a result, the images became the
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Art with Heart #4Eva. Find out more about Eva’s legacy at www.65RedRoses.com.
Dr. Carol Ann Courneya in front of a poster image of the collaboration between Eva and Cyrus. heart of our #4Eva campaign. They were also used in the promotion of the film and inspired collaboration with BC Transplant, which commissioned the pair to do a Live Life. Pass it On photo series. The photos depicted Eva with her lungs and other transplant recipients with the organs they had received painted on their bodies. “I was thinking about how successful those first photos Eva and I did together were, and I thought: why not round up more transplant recipients and do the same body paint that Eva had done on herself? It could be something that BC Transplant would be interested in using in an advertising campaign. After I talked to Eva about it, we went to BC Transplant with the idea and they loved it! My initial vision to have it in billboards, in print, online, and on public transit came to be. I’m just so grateful that this all overlaps with Phil and Nimisha’s movie about Eva and her whole story, and that it finally has an avenue to get out into the public and make a difference.” ~Cyrus McEachern
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Sadly, Eva died at the age of 25. However, the transplant gave her two more vibrant years to spread her love. As she said:
“This is the end of my life, but it is not the end of my love. It is not the end of my story”.
Hello Cool World, an award-winning creative & digital agency that works internationally in the areas of health and wellness, harm reduction, and social justice, became a distributor of the 65_RedRoses documentary in Canada and the manager of the #4Eva campaign to ensure that Eva’s campaign and legacy for organ donation and CF Awareness continued. In 2015, in partnership with Arts Health Network Canada, Hello Cool World created a segment about the Heartfelt Images contest and 65_RedRoses as part of a mini-documentary called Arts & Health. It can be viewed at www. ArtsHealthNetwork.ca. Readers of The Muse will be able to celebrate Eva’s life with special access to the 65_RedRoses documentary until April 30. Use the promo code, THEMUSE, to view the documentary through the following: https://vimeo.com/ondemand/65redroses.
Through her story and her art, her campaign continues. Forever,
Cyrus McEachern with filmmakers Nimisha Mukerji and Philip Lyall
The Four Humours Revisited By Abirami Kirubarajan Art by Sama Anvari
Her sanguine sentiment is a little off Sweltering warm smile and flushed skin under fluorescence Indifferent to intravenous drips, She thanks the nurses bringing trays Yet her parents foam pale yellow choler, Dryness of their words contagious, Depth of their outrage palpable, I pause and she falters She requests a second opinion Her briny presence ceases to define our floor Once cigarette-stained and painted, Her nails now return blue As machines begin to darken, She begs me to spin her gold Aware of their gaze, I clear my throat The phlegm stifles what remains The sounds of the hospital cascade With whirring wheels and conversations as I pray to not forget their faces
ABOUT THE AUTHOR - Abirami Kirubarajan is a third year Bachelor of Health Sciences student at McMaster University. Her interests include the medical humanities, English literature, and creative writing.
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It Takes One Song
By Isabella Fan Art by Cathy Lu
It was my first time hearing Abide With Me found myself singing it to those locked up in the unit to help the conscious, the mute, the blind, the lost bear the lie that time will pass for them. Swift to its close ebbs out life’s little day; It shone the spotlight for the conscious to sing aloud but then for binding reminders of her sister’s funeral, and so pleasant surprise was just a false first impression as she sang the tune in mourning.
Earth’s joys grow dim, its glories pass away; It was the secret that the mute really could sing but her attempts were teased by her lost ability to read, so like before when she moves not past the first stanza the whispers of her secret remain unheard. Change and decay in all around I see — It soothes and quiets down the blind’s tantrums but flings them back out during the next stark silence she begs the absent angel that she is ready to be taken, my invisible glove knows only to keep rubbing her shoulder.
O thou who changest not, abide with me. It dawned on my chest an unfamiliar pity and softness then a reminiscent burden of an old gentleman’s grief over his lost, unanswered cries for his mother as his hands pressed the weight of sorrow into mine. With these strangers there was an unsaid understanding wringing out compassion to quench their thirst for home as intangible droplets lining up in a long thread tie some lost souls to the spool I anchor in my role.
Amplified in their feelings of imprisonment they pay the price for the melody’s release, but perhaps their grief is better felt and confessed than internalized along with their sinking conscience.
ABOUT THE AUTHOR - Isabella is a second year Bachelor of Health Sciences student at McMaster University. She loves to write, and has particular interests in poetry and music. In her spare time she is outside exploring the city, learning about all art forms, and attending concerts.
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Our Health Depends on the Stories We Tell By Patti Fraser, Ph.D
The rainy drives over the Ironworkers Memorial Bridge remain one of the residing memories of my tenure as a community engaged artist in the Arts, Health, and Seniors Project at Silver Harbour Seniors Centre in North Vancouver, British Columbia. Driving across Burrard Inlet heading north towards the mountains of the coastal range. Each trip across the inlet is a reminder of how vulnerable our humanity is in the face of speeding rainswept traffic, how small we are when measured against the looming brace of coastal mountains, and how precious the ways in which we seek meaning in our lives that connect our vulnerable humanness to this large world.
The Arts, Health, and Seniors Project was created with the intention of contributing to the existing knowledge surrounding the connections between health and creativity with older adults. This three-year community-engaged arts research project was initially inspired by the findings of The Creativity and Aging Study.1 The findings of this research project concluded that quality programming in the arts has a significant impact on maintaining and potentially improving the physical, mental, and social health of the elderly. The Silver Harbour Digital Storytelling Group was one of the four sites that commissioned commun-
ity-engaged artists to work with seniors in the Arts, Health, and Seniors Project.2 In addition to community-engaged art practice sessions, the Silver Harbour Digital Storytelling Group also formed a peer-to-peer research inquiry that looked at how the re-fashioning of stories from lived experiences into sound and image could affect one’s health and well-being.3 The group began by defining health as encompassing physical, spiritual, and mental domains, rather than simply the absence of disease. This inquiry produced many anecdotal examples of how the participant’s sense of health and well-being was being affected by their participation
1According to The Creativity and Aging Study; The Impact of Professionally Conducted Cultural Programs on Older Adults (Cohen 2006), when communities of older adults gather to create meaning through an artistic practice; self-esteem is enhanced, feelings of isolation and alienation are relieved, prescription drug use is reduced, and falls are less frequent. Cohen’s study, conducted in three large American cities, represents one of the very few qualitative research projects dedicated to studying the effects of artistic practice on the health and well-being of older adults.
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11 as a primary understanding in this peer-to-peer research. What became significant to my work as an artist-researcher was the relationship between the demanding work of remembering stories of lived experiences and working creatively with these stories and the participants’ health. As we developed trust with each other in a community-engaged art setting, the seniors began to share events and issues that had been forgotten or suppressed and showed new aspects of their identities. The creative work of storytelling required that the seniors examine what might be influencing their lives in the present moment, not only in the past. What became clear for many of the participants was that the tension that often results from creative work opened up the possibility of renewing and revitalizing their identities.4 These renewed identities led to the development of a greater sense of independence and control over their lives. in the group. For example, some recounted the ways they were maintaining their exercises in order to stay healthy and fit enough to participate in the program because “they had so many stories to tell”. All of the participants reported a great sense of achievement in learning to use new technology. However, it was not only the way in which the older adults were able to adapt and learn new technologies that was a key understanding of this project. The relationship between health and the way in which these seniors came to view the importance of telling their stories emerged
In the making of skillful and meaningful stories from their lived experiences, the participants reported that the creative work served as a form of reassurance. As one participant said, “I want to make digital stories about my life, so I don’t disappear”. What she understood was the way in which her story existed as an entity independent of herself; these tales live on well beyond the storyteller. The challenge that the storytellers in this setting had to deal with was producing stories in a way that could be understood and appreciated by
others, even those who did not have intimate knowledge of their lives. Working creatively with stories of lived experiences became a way of structuring perceptual experiences, organizing memories, and purposefully reconstructing the events of a life. These were stories that helped the seniors make meaning out of the present moment. In my experience at Silver Harbour, the participants in the project initially engaged with digital technology because they wanted to learn new skills. However, after the excitement of learning this new technology subsided, we were confronted with the same human problem and the more difficult challenge we find in all creative work: How do you tell a story about your life? How do you tell a story that others can understand? Or a story others will want to watch and listen to? Henry James was well known for saying, “stories happen to people who know how to tell them”. It is only through acts of imagination that we can share the narratives of our lives. Slowly, with some hesitance, the digital storytellers at Silver Harbour came to see their lived experiences in this light. In some cases, the stories that were produced were transformational. For example, one participant used a story to describe the alienation and discord that he had felt throughout much of his life. His digital story was about his attempts to come to terms with what he felt was denied to him as a child and remained unacknowledged for many years. The video story that he produced at Silver Harbour was subsequently screened at the Van-
2vancouver.ca/files/cov/arts-health-seniors-project-full-report.pdf 3Funded by the Canadian Public Health Agency, a self-produced documentary by seniors called The Peer Inquiry Documentary in Health, Well-Being, and Creativity was created out of this research. These facilitated dialogues that formed the basis of the peer inquiry research project took place in three-hour sessions once a week for six weeks during January and February 2009 at Silver Harbour Centre in North Vancouver. 4www.youtube.com/watch?v=lN1oesoja7I - My Story by W.A. Finlayson and Corin Browne (2010)
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Our Health Depends on the Stories We Tell couver International Queer Film Festival in 2007. Many of the older adults spoke at length about the impact that producing and continually refining the stories from their lived experiences had on their well-being. This insight was furthered by one senior’s observation that working on stories and images from the past had repercussions in the present. In her experience, the images that had looked ‘perfect’ to her at one time now no longer did. When she produced a digital story about a relative that died, another family member challenged her reminiscences. The ensuing debates between her sibling and herself based on the differences in their individual memories were ultimately responsible for her having to, “let go of an old sense of perfection and let it still be alright”. Stories such as these could be viewed not only as records of an experience, but also as resurrections of an experience. The connection between a person’s well-being and the opportunity to express their story is one way to serve the fundamental need to search for and creatively express meaning. This search for meaning is fundamental to human existence. It provides a sense of comfort and well-being in the world when our identities and self-conceptions are actively being re-interpreted and revised. Anna Ornstein, a child survivor of Auschwitz, wrote on the distinctions between people who retained hope and those who were unable to do so. According to Ornstein, “Those who retained hope fared better physically and psychologically” (Paris 2008). She claimed that the difference between the hope-
ful and hopeless resided in acts of creativity, which were prohibited in the camps. Those who found a secret way to create retained a sense of hope. Ornstein concludes that it was their expressions of creativity that kept these prisoners alive. In order for us to engage in practices of meaning-making through creative work, there needs to be programming in place to protect that inquiry. The principles and ethics of a community-engaged setting with artists who seek to provide environments that support this kind of creativity was key to this work. This practice, confirmed by the findings of the Arts, Health, and Seniors Project, has illustrated that direct relationships between community-engaged art practices working with seniors result in changes in identity, improvements in mental health, strengthening of family relationships, enhanced self-esteem, and positive physical outcomes. I still remember those trips across the bridge towards the great mystery of mountain beyond. Each trip across the inlet a reminder of how vulnerable our humanity is in the face of speeding rainswept traffic, how small we are when measured against the looming brace of coastal mountains, and how precious the ways in which we seek meaning in our lives that connect our vulnerable humanness to this large world.
Older Adults. The George Washington University; The Centre on Aging, Health, & Humanities, Washington, D.C. Crozier, Lorna. (1993). “The Arduous Partnership: Memory and Invention.” WGA WestWord, 13(5/6): 1, 10-11. Denzin, N. K. & Lincoln, Y.S. (Eds.). (1994) Handbook of qualitative research: Sage: Thousand Oaks, CA. Eisner, E. W. (1998). The Enlightened Eye; Qualitative inquiry and the enhancement of educational practice. Prentice Hall: Upper Saddle River, NJ. Lather, P. (1986). “Research as Praxis.” Harvard Educational Review. 56 (3) (pp. 257- 277) Lambert, J. (2002). Digital Storytelling; Capturing Lives, Creating Community. Berkeley, CA.: Digital Diner Press. Paris, A. (2008). Standing at Water’s Edge; Moving past fear, blocks, and pitfalls to discover the power of creative immersion. New World Library: Novato, CA. Pennebaker, J. W. (1997). Opening Up; The Healing Power of Expressing Emotions. New York: Guildford Press. Richardson. L. (1997). “Narrative Knowing and Sociological Telling” Fields of Play; Constructing an academic life Piscataway, NJ: Rutgers University Press. Von Mering, O. & O’ Rand, A. (1981). “Illness and the Organization of Health Care: A Sociocultural Perspective.” In Christine L. Fry (ed.) Dimensions: Aging, Culture, and Health. (pp.255- 285). New York: Praeger. Wilson, R.S., Medes de Leon, C.F., Barners, L., Schnieder, J.A., Bienias, J.L., Evans, D. A., & Bennett, D. A. (2002) “Participation in cognitively stimulating activities and risk of incident Alzheimer disease. JAMA, 287, (6): pp.742-48.
Arluke, A. & Peterson, J. (1981). “Accidental Medicalization of Old Age and Its Social Control Implications”. In Christine L. Fry (ed.) Dimensions: Aging, Culture, and Health. (pp.271 - 284). New York: Praeger. Bruner, J. (1987) “Life as Narrative”, Social Research. 54, (1). Chopra, Deepak. (1993). Growing Old. New York: Random House Cohen, G. D. (2006). Project Title: Creativity and Aging: The Impact of Professionally Conducted Cultural Programs on
ABOUT THE AUTHOR - Patti uses narrative as a form of inquiry in her work as a community-engaged artist, story editor, educator, and research consultant in Vancouver, British Columbia. She was the 2013 Honouree for the Vancouver Mayor’s Art Award for Community Engagement.
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Creating Meaning, Creating Relationships:
Music Therapy at the End of Life By Sarah Pearson, MMR, RP, MTA Art by Adhora Mir
How do we play the soundtrack to a person’s death? This is what I think about on a weekly, sometimes daily, basis. Working as a music therapist in the oncology and palliative care units of a hospital, I often meet a patient and their family in the final moments of their life. When the hospital room is the most tender, when the fatigue from such a long treatment journey is settling in and grief begins to loom, that is when I tend to find myself meeting a family for the first time. Early in my career, I wrote these words soon after one of my first experiences of playing for someone at the end of life. Yesterday I played quiet, improvised piano and sang in a very soft, breathy voice for a family as they gathered around their dying mother, who was gasping her last breaths. As their emotions deepened, so too did the emotional intensity of the music. Then I brought it down and held them with the music. It was like I was playing the soundtrack to the moving, meaningful last moments of their mother’s life. My eyes were glued on their mother, whose face was covered with an oxygen mask,
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breathing with difficulty every 10 seconds or so, so I could offer grounding downbeats in the music as her chest would fall. There were moments of total connection with everyone in the room. As the adult daughter curled up against her mother like a baby and her brother cried, the music seemed to peak, like the climax of a movie. I felt the tears well up myself, which I set aside because I needed so much to stay present for them, and instead brought that emotion into the music. I kept the
music grounded, trying to emote both closure and expansion, and bring it way down after that peak moment. After 30 minutes of playing, through some instinctive sense of knowing that I could not explain, my fingers settled on a C-major chord and I started to play Bach’s Jesu, Joy of Man’s Desiring. It was slow and steady, and the sacredness of Bach himself felt alive in the notes. After I finished, I let the silence hang in the room for a few moments. Then I quietly
Music Therapy at the End of Life left the family, feeling like we had wrapped things up and both a catharsis and a closure had been had. Looking back on these words, I remember how new the experience was for me. I’ve since had scores of sessions much like this one, and while the intensity of these experiences is just part of my everyday life, it still feels like an honour every time. Music is an ancient human phenomenon, and is as difficult to define as life itself. What is noise to one person can be music to another. Few would dispute the claim that a Beethoven symphony or Brahms concerto is music. Yet a screamo song may speak to the depths of one person’s soul, while sounding like a nightmarish racket to someone else. The sound of the birds singing after a spring rain may be music to one person’s ears and yet go entirely unnoticed by another. My own mother would sing Rock-a-bye baby completely off-key when I was a child, and yet hers is the sweetest singing I know. Music is in the ear of the beholder. It is in the act of giving and receiving that sound becomes music. So when I am invited to make music in the room of a dying person, I approach it as an opportunity not so much for performance, but for the formation of a deep, wordless relationship. Music therapy is a fairly modern healthcare profession – in Canada it has only been an accredited scope of practice for a little over 40 years – but the concept of using music for
healing is as old as civilization itself. Infants use vocalization to selfsoothe, as do most mammals. Ask a teenager how they feel about the music on their devices, and they’ll probably tell you: “music is my therapy”. Music therapists are trained to use musical elements such as pitch, timbre, melody, mode, and lyric to address clinical goals. Training is rigorous and requires a minimum of two years of post-secondary education, as well as years of prior musical training, and a 1000-hour clinical internship. The sound that music therapists make always has a therapeutic goal in mind. Every note is meant to carry a specific intent. Hospital-based sessions in an oncology and palliative care program may look like: songwriting with a patient or family member to express final goodbyes; improvising on instruments with a patient to communicate existential distress; playing live music to aid pain management; having singalongs of cherished old tunes with loved ones to create a feeling of togetherness and well-being. I’ve had patients banging on drums or weeping into a rainstick as we make music together that reaches the depth of their fear, anguish, and grief. I’ve seen patients finally experience the peace and spiritual connection that they’d felt estranged from since their disease began through engaging with live music.
there can be a feeling of heightened presence in the room of someone who is dying, but there can also be a sense of total crisis. On-the-spot assessment is critical in my work and is made more complicated when there are multiple people surrounding the dying person. Understanding how to match the mood in the room through music – and then, in some way, transform it – is a music therapist’s job. Just as a wedding musician will design the perfect aural backdrop to the couple’s special day, the end-oflife music can transform the dreary hospital room into a space of meaning and presence. The experience can be deeply connective for the loved ones, and healing for the staff too, who hear the music trickling down the halls. In the end, creating the soundtrack to a person’s death is not about being virtuosic or grandiose. It’s about attuning to everyone in the room, and responding to their emotional, spiritual, and existential needs through the most transcendental language that humans have.
But when someone is at the endof-life, the music can carry a whole new meaning. Even in the busiest of hospitals,
ABOUT THE AUTHOR - Sarah Pearson, MTT, RP, MTA, is a music therapist at Grand River Hospital in Kitchener, Ontario, and the program development coordinator at the Room 217 Foundation. She is a registered psychotherapist of Ontario and an accredited music therapist. Learn about how to integrate the power of music into your care setting through the Music Care Training, led by Sarah: www.room217.ca. If you would like to find a music therapist, use the resource www.musictherapy.ca.
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Office Art: Improving Health Literacy and Recall By Rachel Boyle
An important role of a physician is to educate patients. The utility of health information presented in a clinical setting is, however, limited by the extent to which it is understood, retained, and acted upon by patients. For example, comprehension and the ability to assess options are prerequisites for informed consent and lifestyle modifications. Retention of health information is crucial for providing an accurate medical history and adhering to a treatment regimen. The ability to integrate and apply health information empowers patients to enhance their present and future well-being. Unfortunately, inadequate health literacy levels and recall ability are widespread and impede successful patient education. There are many ways in which healthcare providers can tailor their communication to circumvent barriers associated with health literacy and recall. One effective and efficient strategy that I observed during a sports medicine elective was the use of illustrations as an adjunct to verbal explanation. Limited health literacy is a significant barrier to patient education in clinical settings. The Canadian Public Health Association defines health literacy as: â&#x20AC;&#x153;the ability to access, understand, evaluate, and communicate information as a way to promote, maintain, and improve health in a variety of settings across the life-courseâ&#x20AC;?.1 Health literacy is influenced by access to resources, living conditions, age, and basic literacy and numeracy skills.2 Only 45% of Canadians aged 16 to 65 have adequate health literacy to meet the demands of independent
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daily living.3 Moreover, only 12% of Canadians over the age of 65 have adequate health literacy.3 This imbalance is particularly problematic as older adults have a more pressing need for health information due to heavier burdens of chronic disease and increased utilization of healthcare services.3 Limited health literacy is associated with less autonomy in decision-making; suboptimal medication use and self-care; and higher morbidity and mortality. Patients with higher health literacy are more likely to prefer patient-involved decision-making and to describe collaboration and bidirectional information exchange with their physicians.4,5 Conversely, patients with limited health literacy report greater dependence on physician ad-
vice.5 A study on health literacy and medication use found that adults with very low health literacy were more likely to exceed the maximum dose of acetaminophen than adults with adequate health literacy.6 Health literacy is also positively associated with better diabetes self-care behaviour.7 A prospective cohort study demonstrated that individuals aged 65 or older with inadequate health literacy had significantly higher mortality rates compared to individuals with adequate health literacy, even after adjusting for demographics, socioeconomic status and baseline health.8 In addition to being able to understand health information, patients must be able to recall the information for future use. One study found that patients only recall slightly
Office Art over half of medical information both immediately following and three weeks after a consultation with a nurse.9 Furthermore, greater recall at three weeks was associated with better self-reported adherence to medications. In another study, older adults could only actively reproduce 23% of medical information, as assessed by open-ended questions, immediately after a consultation.10 Given the prevalence and complexity of inadequate health literacy and recall, as well as their relevance to different health outcomes, these barriers should be addressed by a comprehensive, multifaceted approach. One important mediator of health literacy and recall within
the control of a physician is the way in which they present information. Communication style is variable and no one approach will be universally effective; however, during my sports medicine elective, I observed one method that appeared to work very well. My preceptor, Dr. William Stanish, drew simple images on the backs of files to supplement his verbal explanations (Figure 1). The illustrations helped patients understand basic anatomy, as well specific pathologies, etiologies, and treatment options. For example, for a patient with osteoarthritis and medial joint space narrowing of the knee, a simple drawing can show the relation of the femur to the tibia as well as the offloading that a brace
could provide. Since the drawings were on the backs of files, they could easily be reviewed at subsequent visits. From my perspective, patients were highly receptive to the dual-modality presentation of health information. The literature largely substantiates the effectiveness of audio-visual presentation on health literacy and recall. One relevant publication is a systematic review of interventions aimed at improving medication information.11 The majority of studies on visual interventions that assessed knowledge or adherence, or both, reported statistically significant improvement. Research involving participants with low health literacy and who identified as a ra-
FIGURE 1 - Files from Dr. Stanish's Orthopedic & Sports Medicine Clinic
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Office Art cial minority found that a video animation was effective in improving health research literacy, in terms of identifying gaps in personal knowledge and seeking additional information.12 A study on patient comprehension of diagnosis, treatment plans, and discharge instructions demonstrated that supplementing verbal explanations with text and illustrations improved comprehension compared to verbal explanations alone.13 Another systematic review found that there is still much uncertainty concerning the effectiveness of audio-visual information for informed consent. Trends of slightly improved patient understanding and satisfaction are emerging, but higher quality evidence is needed.14
vant to verbal explanations is an example of an effective strategy to enhance patient education in a clinical setting.
One study found that adults were able to recall more information when it was presented in an audio-visual modality relative to written form.15 Another study found that recall of health information by older adults with low literacy levels was higher with an illustrated format than a text-only format; however, including illustrations did not affect recall among those with high literacy levels.16 These results suggest that a physician does not need to assess a patient’s literacy level prior to using illustrations. Visuals can only serve to maintain or enhance recall abilities.
5) Smith, S. K., Dixon, A., Trevena, L., Nutbeam, D., & McCaffery, K. J. (2009). Exploring patient involvement in healthcare decision making across different education and functional health literacy groups. Social science & medicine,69(12), 1805-1812.
Presenting information to patients in a way that is understandable and memorable is a complex challenge. While some barriers to adequate health literacy and recall are outside of a healthcare professional’s control, communication style is one modifiable factor. Based on my own experience and current literature, the use of illustrations as an adju-
1) Rootman, I., & Gordon-El-Bihbety, D. (2008). A vision for a health literate Canada. Ottawa, ON: Canadian Public Health Association. 2) Been, W. H. W., & Go, W. S. W. (2001). Literacy and Health Research in Canada. Health. 3) Canadian Council on Learning (CCL). (2007). State of learning in Canada: no time for complacency. 4) Seo, J., Goodman, M. S., Politi, M., Blanchard, M., & Kaphingst, K. A. (2016). Effect of Health Literacy on Decision-Making Preferences among Medically Underserved Patients. Medical decision making: an international journal of the Society for Medical Decision Making, 36(4), 550.
6) Kaufman, D. W., Kelly, J. P., Battista, D. R., Malone, M. K., Weinstein, R. B., & Shiffman, S. (2015). Relation of Health Literacy to Exceeding the Labeled Maximum Daily Dose of Acetaminophen. American journal of preventive medicine. 7) Reisi, M., Mostafavi, F., Javadzade, H., Mahaki, B., Tavassoli, E., & Sharifirad, G. (2016). Impact of Health Literacy, Self-efficacy, and Outcome Expectations on Adherence to Self-care Behaviors in Iranians with Type 2 Diabetes. Oman medical journal, 31(1), 52. 8) Baker, D. W., Wolf, M. S., Feinglass, J., Thompson, J. A., Gazmararian, J. A., & Huang, J. (2007). Health literacy and mortality among elderly persons. Archives of Internal Medicine, 167(14), 1503-1509.
adherence in patients with inflammatory bowel disease. Journal of Crohn’s and Colitis, 7(11), e543-e550. 10) Jansen, J., van Weert, J., van der Meulen, N., van Dulmen, S., Heeren, T., & Bensing, J. (2008). Recall in older cancer patients: measuring memory for medical information. The Gerontologist, 48(2), 149-157. 11) Wali, H., Hudani, Z., Wali, S., Mercer, K., & Grindrod, K. (2015). A systematic review of interventions to improve medication information for low health literate populations. Research in social & administrative pharmacy: RSAP. 12) George, S., Moran, E., Duran, N., & Jenders, R. A. (2013). Using animation as an information tool to advance health research literacy among minority participants. In AMIA Annual Symposium Proceedings (Vol. 2013, p. 475). American Medical Informatics Association. 13) Tsahakis, J. M., Issar, N. M., Kadakia, R. J., Archer, K. R., Barzyk, T., & Mir, H. R. (2014). Health literacy in an orthopaedic trauma patient population: Improving patient comprehension with informational intervention. Journal of orthopaedic trauma, 28(4), e75-e79. 14) Synnot, A., Ryan, R., Prictor, M., Fetherstonhaugh, D., & Parker, B. (2014). Audio-visual presentation of information for informed consent for participation in clinical trials. Cochrane Database Syst Rev, 5. 15) Bol, N., van Weert, J. C., de Haes, H. C., Loos, E. F., & Smets, E. M. (2015). The effect of modality and narration style on recall of online health information: results from a Web-based experiment. Journal of medical Internet research, 17(4). 16) Meppelink, C. S., Smit, E. G., Buurman, B. M., & van Weert, J. C. (2015). Should we be afraid of simple messages? The effects of text difficulty and illustrations in people with low or high health literacy. Health communication, 30(12), 1181-1189.
9) Linn, A. J., van Dijk, L., Smit, E. G., Jansen, J., & van Weert, J. C. (2013). May you never forget what is worth remembering: the relation between recall of medical information and medication
ABOUT THE AUTHOR - Rachel Boyle grew up in Halifax, Nova Scotia. She completed a Bachelor of Science in Kinesiology at Queen’s University and is currently in her second year of the medical program at Dalhousie University. THE MUSE • SPRING 2017
Of Love and Home By Beryl Woodrow
Years ago, I remember telling a Korean student of mine that my husband and I had no children. She questioned as to who would look after us as we aged. It was a simple and genuine concern. Her response, I believed, was rooted in a cultural difference. I thought that if we needed to be taken care of, we would reluctantly go into a longterm care home. There were no other choices that I knew of, with or without children. I have thought about that question on and off for the past three decades as I watched families of friends and our family reach their 80â&#x20AC;&#x2122;s and 90â&#x20AC;&#x2122;s. As my husband and I begin our 32nd year in our house and our 40th year in our relationship, becoming elderly is just around the corner, and we still do not have any children. In 2012, with this question in the
back of my mind, I embarked upon an ongoing photography project spurred on by a photo documentary course I was taking. I was interested in photographing the lives of 80- and 90-year-old couples who continue to live in their own homes. With the everyday as the site for this work, I explored how these couples maintain their independence and purpose given the inevitable health challenges that come with age. As the project grew, I was inspired to create a record of their world filled with meaningful pursuits, creativity, love of home, and each other.
neighbours, families of friends, and friends of friends. They are middle class, from a wide range of professions, and mentally astute. The resulting series straddles the lines between portraiture, social documentary, and visual narrative. It considers what it can mean to be elderly in the 21st century in this country.
I spent many hours listening to their stories as I photographed facets of their lives at home, reflecting on the cultural assumptions that we might have about the elderly.
As I reflected on my experience, I thought of what these couples share. I observed their senses of humour and positive attitudes. They are all engaged in creative, stimulating activities and show a curiosity about the world. When they had to stop driving or making dinner, or started having difficulty with the stairs, they became resourceful. They all have a strong social network, a connection to community, and a support system.
The eight couples I connected with over four years are my relatives,
What stood out for me is their love and devotion to each other and
Sam and Margaret - In Their Living Room - Edmonton, 2013 Sam, 90, a retired science teacher and Margaret, 88, a former candy sales clerk, have been married for 67 years. They first met at a synagogue function in 1943 when Sam was on leave from the army. They have three children and numerous grandchildren and greatgrandchildren. They have lived in their condominium for the past 17 years. A relative gave them a print of a painting that takes center stage above their sofa. It reminds Margaret of Psalm 23, which she says she finds comforting.
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Of Love and Home their pride in their home, filled with meaningful objects that are steeped in memories of past and present experiences.
And finally, I have come away thinking that even without children of our own, maintaining cohesive relationships with family and friends
may help us continue to live in our own home as we advance into our senior years.
Sam and Margaret - Setting the Table - Edmonton, 2013 Sam talks to their greatgrandchildren over the phone while Margaret, enjoying a joke with her niece, sets the table for dinner. She has been making meals everyday for the past 67 years of marriage, but has recently had to become more inventive with freezing meals and purchasing precooked items. Sam and Margaret drive their PT Cruiser to play with the horses, shop for groceries, and participate in services at their synagogue, among other activities. But it is the telephone that connects them to their family and friends each day. Murray and Eleanor, In their Living Room, Victoria, 2014 Murray, 90, and Eleanor, 89, recently moved from a condominium in Ontario to a large home in Victoria to be close to their children. They first met at a music club in 1943. Murray is a retired physician, professor, and recipient of the Order of Canada. Eleanor holds a degree in home economics and has been instrumental as a photographer taking photos to illustrate Murray’s lectures. Today, they are students of online courses in literature and photography. They attend gatherings and book clubs where they discuss various topics pertaining to philosophy, literature, and culture. Murray continues to write for various journals and online magazines. ABOUT THE AUTHOR - Beryl holds a Bachelor of Arts Degree from the University of Alberta, a postgraduate diploma in Deaf Education, a Master’s degree in Counselling Psychology from the University of British Columbia, and a Certificate in Fine Arts Technique from Emily Carr University of Art and Design. She is currently a student in the Photography Certificate Program at Langara College. Her ongoing photographic series, Of Love and Home, has been profiled in the Arts Health Network Initiatives e-magazine, Agewell Chataqua Project e-book and exhibition(Simon Fraser University), Boreal Collective website, and Langara student exhibition at Gallery 295. The full series will be exhibited in April 2017 during the Capture Photography Festival in Vancouver at Gallery 49, Langara College.
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Dance With Me By Suzanne Wood Art by Adhora Mir
The privacy curtain separates us, obstructing my view of the hospital room door, early on the day after my admission to Cardiology. There is no mistaking her arrival as Mr. Murphy, well into his eighties, calls out from his bed.
“Here she is, Miss Jamaica! Good morning!” In a moment, I see who he has addressed. The young, lanky woman swooshes her mop, back and forth, side to side, and under the bed. Dark brown skin, perfect white teeth smiling, grinning. Vibrant scrubs of turquoise, emerald, and cobalt blue.
“Miss Jamaica, would you like to go dancing with me as soon as I get out of here?” he playfully asks. “I love to dance; you must too!” “I can tell by the way you dance with your mop.” She giggles and laughs. Mr. Murphy and I are hooked up to cardiac monitors, ingesting low-sodium breakfast, beta-blockers, ACE inhibitors, as she scrubs and polishes, doing what she believes to be her work.
ABOUT THE AUTHOR - Inspiring others to try art as complementary medicine, Suzanne believes in the magic of her blue-green elixir paintings, word balm poems, and stories to soothe her health anxieties as she copes with the symptoms of multiple autoimmune connective tissue diseases. She is a writer, poet, artist, and patient advocate who enjoys tossing out words recklessly and playfully on her blog: www.wantonwordflirt.com.
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Art for All
A Tribute to Daphne Odjig By Karen Close, BA, BEd
As a teacher of English and the Visual Arts, I was adamant that the creative process guides personal growth and healing. Going beneath the surface of existence into the realms of intuition and imagination can bring relief and wellness. In recent years, I have been an advocate for creative aging and understanding the need to introspect. In the spring of 2013, when artist Daphne Odjig (1919-2016) was moved to a care facility in Kelowna, British Columbia, she and I were able to deepen a friendship that had begun 10 years earlier. Mine is not a perspective shared by others who will write about Daphne, but the laughter and routines of our friendship meant a great deal to the both of us. I love Daphne’s work and welcomed the opportunity to
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better understand her humble, original mind. One of Odjig’s most outstanding works is the mural The Indian in Transition (1978). 8’ high by 27’ long, it hangs in the Canadian Museum of Civilization. Odjig valued personal vision, understood transitions, and respected the creative process. In 2014, fearful that she would lose the deep pleasure she gained from making art, Odjig trained her arthritic hands to continue drawing. Up until her death at age 97, she required minimal medication and remained alert and creatively engaged. The once large, heroic panels and interpretations of a cultural odyssey, which earned her reputation, transformed into small drawing tablets of her soul’s reminiscences.
I began to jokingly call these works “Daphne Doodles”, a name that she enjoyed. Some were cultural, some reflective, and others just humourous responses to letting the pencil guide the work and going along with any mistakes made. Most importantly, as her hearing declined and conversation became more difficult, she never felt alone. Being sick at a young age had taught her to pay attention to what lies beneath the surface and to create a self-honouring life. There is an innate part of all of us that strives to heal – to move toward greater health, wholeness, and interconnectedness with the world around us. As a young adolescent, Daphne was bedridden for six months with rheumatic fever, and then kept at home to rest for the next three years. As she recovered, her grandfather taught her to reflect and value the images in her imagination. Her mother had also been struck by the same disease at a similar age and was an invalid for most of Daphne’s life; at age 34, her
Art for All mother passed away. A recovering Daphne would seek out her favourite spots in the grove surrounding her home. Animatedly, she recalled the moments of being transformed by the sounds around her as she leaned against a tree trunk, gazed skyward, and pondered the mysteries of the world above.
While living in a long-term care facility, Daphne filled her time with drawing. She continually sang songs to herself that she’d learned from her father. Although she did not speak her native language, the words would arise from her memory as she drew. She helped me realise how one needs to program the mind’s internal resources before other faculties are weakened. Spontaneous art-making reveals your consciousness: how you create your life, how you make choices, and what is going on inside of you. The creative process bypasses the conscious thinking mind that is a barrier to the wisdom of the unconscious and the source of personal healing. “You see things, whether you’re asleep or awake... I think these things can be developed, too, if you have the right kind of help... in my dreams, when I’m asleep, I’m more relaxed... If I didn’t feel these things, there’s no way I could put it down in painting like I do. I try
my best to interpret my feelings about the barrier, and things in my own way... like another dimension sort of thing. These things have to come out, that’s part of me, part of my artistry... I work at a fast speed because it’s all there for me. If I have to labour over anything it never turns out...I see it and it just
The Indian in Transition, 1978 happens. I just know it’s supposed to be there. As an artist and as a person, I have been impressed since childhood with the process that takes us from the inner image to the external reality of an image. For me, it has been an endless source of delight and wonderment that awareness, thoughts, and recognitions can come seemingly unbidden from an inner source that, in adulthood, I learned to call the unconscious. I know now as an adult, that every one of us is a fusion of the eternal, of ancestral wisdom, a seer of the future - but some part of us always remains capable of responding to the here and now with originality.” ~Daphne Odjig, A Paint Brush In My Hand I smile when I remember my first visit with Daphne after her arrival at the Kelowna care facility. She gave me an intense look and said, “I know how to make this work. I’ll do what I’ve always done”. And
that is what she did. Her years in care allowed her to leave behind a rich legacy. Workers at the centre and protégés who felt influenced by her example gathered with me at The Kelowna Art Gallery in the fall of 2014. Daphne Odjig at 95: The Art of Self Actualizing cele-
brates the impact of Odjig’s cultural spirit and passion. My hope is that her story will inspire others to heed the call of creative exploration. For my granddaughter Abby’s fifth birthday, Daphne asked what she might draw for her. Abby wanted a rooster. Daphne replied, “Oh, I did that this morning” and gave it to her. “How did she know?” Abby asked me. “Creative spirit is magic,” I responded. When Daphne passed, it was Abby’s first experience of death. She was very thoughtful as she watched the news. The next day while she and I walked in the woods, there was an early snowfall. It was beautiful. “I think Daphne is in these woods too,” Abby said, and I knew that she was listening to the voices beneath the surface.
ABOUT THE AUTHOR - A career as an English and Visual Arts teacher taught Karen that nurturing creativity, as a process of self-discovery, is a means of empowerment. Since February 2008, she has been facilitating heART Fit classes in Kelowna, British Columbia and is a strong advocate for Creative Aging. She has written two books exploring creativity and is the author of the online journal for the arts and aging, Sage-ing With Creative Spirit, Grace and Gratitude www.sageing.ca.
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Diagnostic Dilemma By Carol Dennison Art by Alice Lu
Art by They seek for reassurance, but we continue to invade and pry. Diagnoses evoke embarrassment. They cry out with pain, but we continue the examination anyway. Diagnoses bring relief. They come for healing, but we continue talking statistics and science. Diagnoses deafen hearing. They canâ&#x20AC;&#x2122;t hear, but we continue to talk. Diagnoses shatter expectations. They want to die, but we continue the code. Diagnoses drive defiance. They are breathtakingly unique, but we are experts in stereotypes. Diagnoses carry stigma. They are patients, but we are doctors. Diagnoses are the only divide.
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ABOUT THE AUTHOR - Carol grew up in a small town in southern BC where she spent hot summers swimming and writing poetry. She starting publishing her work when she was 14 and has continued to do so over the last decade. Currently, she is taking a year off from medical school at the University of Alberta to take care of her baby boy and will be returning to her studies in the fall.
Drawing Wisdom Listening to stories: a conversation about culturally safe connection With Jada-Gabrielle Pape, Saanich & Snuneymuxw Nations, and Kat Dodds Jada-Gabrielle Pape and Kat Dodds have worked together in health and wellness promotion and education for over a decade. They first met in the thick of a Star in your Own Stories (SIYOS) Workshop when Jada was working with Chee Mamuk, a program of the BC Centre for Disease Control. Chee Mamuk’s mandate is to provide culturally appropriate, on-site, community-based HIV, AIDS and STI education and training to Aboriginal communities, organizations, and professionals within British Columbia. Kat is the founder of social marketing company, Hello Cool World, and she brought a video crew to work with a group of youth to create short videos as part of the SIYOS workshop process.
their communities. They remain committed to the Drawing Wisdom project. Here is their story:
Drawing Wisdom is Kat and Jada’s new shared project, and it all began with a conversation and a contest entry, as a way of putting together the teachings they received from communities. They wanted to build a platform to sustain this kind of strengths-based work. Significantly, they maintained their relationships with the Indigenous youth, who are now in their twenties. These workshops combined HIV and STI education with hands-on opportunities for twelve teenagers to use camera gear, craft their own messages, and be the stars of their own story. Kat and Jada both knew that the youth’s stories held the wisdom to work towards healing
This was in 2007. In the years that followed, we went to three more communities, ending with Nak’azdli in Fort St. James in 2010.
Duane Grant was 15 when SIYOS came to his community, Kitamaat village. It was a snowy day in January when we travelled up the road to meet twelve youth from the Haisla Nation – People Of the Snow. As Duane says: “Star in Your Own Stories came to our community and changed all of our lives. It was something that we’d never had in our community before. SIYOS helped us learn by involving media, from making our own story to producing, recording, and acting in it. It was a lot of fun. We also learned about sexual health, which changed my life.”
HIV is still highly stigmatized and there are many reasons why people avoid talking or learning about it. Jada says: “As a sexual health educator, I felt that addressing the factors underlying the stigma wascrucial in HIV prevention. How we support each other is a powerful tool in both traditional prevention and activism. With every project we ever did, every community ended up with something that they loved and could keep using to educate about HIV and spread positive messaging about their community,
and the strength and resilience of their young people. The stories are about more than just HIV. They are about strong communities.” Says Kat: “Both of us have a health promotion background, but we are also artists and writers. This gives us less of a “governmental” or purely “medical” perspective. Seeing first hand what kind of impact creative projects have on the youth who participate and the spin-off for the entire community inspired us. We also realized that what worked for HIV education could be applied to any issue. The root causes are shared. And so are the roots of healing.” The process that we followed for SIYOS was laid out in Chee Mamuk’s community readiness model. The first step was always to ensure that the community was ready to talk about HIV and AIDS. If a community does not acknowledge HIV as a problem, the appropriate steps to take are very different than those we would use in a community thatdoes. This applies to all communities and issues with which they are contending. Chee Mamuk would put out a call to community health centres and communities would apply. Once a community was selected, they would commit resources to the workshop, and once a group of youth was confirmed, a date was set for the workshop to take place.
1This project was first conceptualized as “Drawing Wisdom From The Well” our entry into Operation Blue Sky Aboriginal Health Initiative Challenge, where it won the People’s Choice Award with over 5000 votes.
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25 Chee Mamuk would provide educators and resources, and Hello Cool World would bring a team of media professionals to film and train the youth. After documenting the educational component about STIs, we would facilitate a practical session on crafting key messages that would move directly into a hands-on creative process with the video team. In a weekend, we would shoot their film. The film footage was edited and the rough cut was subsequently sent back for review. We stayed in touch with each community after the SIYOS workshop to ensure that they felt supported. In Nak’azdli, the youth addressed colonization directly. They named their film By My Name, reflecting an idea that had emerged during a brainstorming session in which they were asked how they wanted to be addressed. They responded: “Don’t call me Indian, call me by my name”. They also identified that they wanted to learn more of their own songs, in the Daketh language, but needed drums. Alicia Ericson was part of the group of Nak’azdli teens, and she recalls: “We were in three small groups brainstorming and even without talking to each other during the session, we had the inspiration to invite the well known cultural duo, Ruby Dominic and Guy Prince, into our midst for the duration of the project. All of our groups also felt drawn to the idea of making traditional hand drums together.” This showed they were still engaged and did not want to lose the momentum sparked by the workshop. Chee Mamuk provided funds for the cost of materials and a twoday workshop. Alicia adds: “The drum-making workshop included our teacher, Guy Prince, and about ten participating youth. We made drums in the Traditional Daketh Style, with Moose hide, Sinew strings, and a pine wood frame. We made the frames of our drums on one day and planned our designs for the finished drum. The next
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day, we stretched the Moose hide over our frames. This is the tricky part. As the hide dries out, it tightens the strings. As such, you have to make the strings loose enough so as not to rip a hole in the hide, but tight enough to make a clear sound when it is done. On the third day we made our drum sticks”. By the end of the project, each youth had crafted their own drum and had learned some of their traditional songs. They also filmed the workshop themselves and sent footage to be included in the final film. Alicia views the drum-making workshop as a very thoughtful way of Hello Cool World and Chee Mamuk expressing their gratitude to the youth involved. When each film was finished, it was screened at a “World Premiere”, which was a community feast that usually had about 200 people in attendance. At the World Premiere of the Nak’azdli film By My Name, the youth sang some of their traditional songs for the elders and community members. “I want Nak’azdli youth to understand that they have the power”. ~Alicia Ericson “I learned to drum for the first time, and I learned new songs from my culture”. ~Desiree Whitely “Culture is power”. ~Alex Leon While Chee Mamuk was unable to invest resources into the SIYOS workshop after 2010, the videos are still being used and are freely available online. Moreover, the model continues to be highly relevant for any social issue. Says Kat: “Using a documentary process offers so many possibilities for storytelling, and the model remains the same, even when focusing on different issues or areas of exploration. It’s a natural fit for research that gives a voice to the sub-
jects and for knowledge transmission. It can provide space to mobilize around what matters to individuals and to communities. It’s also important to note, that while storytelling is a culturally relevant mode within communities, I didn’t conceptualize the SIYOS model to ‘be indigenous’. The process I had been following always started by giving voice to the intended audience. I was drawn to doing these projects with communities because the model found a home with Chee Mamuk. It fit”. The creative approach we take, whether we are making a messaging campaign, a short film, or digital storytelling in another form, is always engaging and effective. The way that projects do not end, but instead spiral into new storytelling and sharing is what inspired us to do this work under the banner of Drawing Wisdom. All along, we’ve also found that doing grassroots, community-driven work leads to relationship building across these projects. We kept in touch with community members and with the youth on social media longitudinally, and in some cases, even hired youth to work on new projects. In 2009, Hello Cool World was contacted by the BC Cancer Agency to do a social media campaign for young women to de-stigmatize Pap tests. This became the Live Aware, Create Empowerment (LACE) campaign. We worked with Jolene Andrew, (Wet’suwet’en & Gitxsan Nations), who became part of the LACE “Action Team.” Over four years, the project evolved and spread across BC, including to 22 First Nations Health Centres. Ts’ewulhtun Health Centre had previously participated in SIYOS, and Community Health Nurse Fairlee Mendoza applauded the LACE Campaign for being adaptable and creating culturally relevant materials for communities around cancer, which she felt had been lacking. Jada joined Hello Cool World to co-create Drawing Wisdom as a
Drawing Wisdom project in 2015, the same year that the Truth and Reconciliation Commission Report (TRC) came out. The TRC is a component of the Indian Residential Schools Settlement Agreement. Its mandate is to inform all Canadians about what happened in Indian Residential Schools (IRS). The Commission documents the truth of survivors, families, communities, and anyone personally affected by the IRS experience. While we have always taken a respectful and culturally sensitive strengths-based approach, the TRC report challenged all Canadians to take action through 98 recommendations. Hello Cool World has made a commitment to be part of this healing process through our creative venue, Drawing Wisdom. In particular, the TRC recommendations have led us to believe that it is no longer possible to talk about health and wellness without directly addressing the impacts of colonization and cultural genocide on identity and well-being. Intergenerational traumas wrought by the IRS system continues to contribute to negative health outcomes in First Nations communities. While health promotion and education have historically addressed health inequities through the framework of the social determinants of health, we feel that this language has put the emphasis on the determinants of disease, at the expense of considering well-being. Colonization is a root cause for the over-representation of Indigenous people in all negative health statistics across the board, from disproportionate HIV rates to suicide. We
are not interested in performing research to simply reaffirm this point. Instead, we are rethinking the phrase “social determinants of health” and are choosing to explore the “social determinants of resilience” through strengths-based projects that emphasize the concept that communities already have the wisdom they need to create culturally safe solutions on their own terms. Our theory is that, through identifying and illustrating what resilience means to them, communities will experience improved health and well-being outcomes. In fact, the shaping and sharing of stories can transform lives. We want to reinforce the fact that our model was inspired by the shared work we have done in Indigenous communities for over a decade. More than being the authors of it, we are witnesses. “In my big dream, I imagine Drawing Wisdom as the venue where we get to distill the deepest stories and the truths that come out of communities and out of history. When projects are implemented in communities, it gives people a chance to shine. When we have our voices heard and our messages heard, we become leaders”. ~Jada Alicia echoes these ideas when asked about the impact that the project had for her and the other youth: “It helped me realize that creativity and leadership go handin-hand. Making the HIV and AIDS educational DVD felt like we were giving something to the world. I didn’t realize how much input I had
contributed until the viewing of the project. For the youth in my community, there’s a feeling of accomplishment. Of pride.” The core principle of Drawing Wisdom is community ownership. We offer flexible tools to facilitate a creative process, including ways that communities can measure the impact of their projects on their unique needs. The model is an opportunity to collectively build a network for sharing wisdom. In all of our projects, we have both drawn from and subverted corporate strategies and tactics used in marketing and the social sciences into storybased social change projects. Jada says: “The Drawing Wisdom model acts as a catalyst for storytellers to come forward and communities to connect with each other. It is an engagement model that is sustainable, that works, and that is culturally safe for Indigenous people. It opens avenues of communication for Indigenous people and allies to have conversations about issues and create reciprocal relationships. Every community has stories to tell. When it comes to education in health and well-being, the way in which the story is told is critical. The stories are authentic and useful when they model strength and resilience. That is the purpose of the Drawing Wisdom model. We do not revel in stories of pain. Instead, we aim to show stories of communities role modelling their healing in the face of colonization. Our creative team offers our tools and team in their service.
ABOUT THE AUTHORS - Hello Cool World is a full service creative agency working internationally in the areas of health and wellness promotion, harm reduction, and social justice. We have been working in the intersections of art and health and wellness promotion since 2001. Many of our projects are collaborations with Indigenous organizations, communities and individuals in Canada. Drawing Wisdom is an initiative to do culturally safe collaborative work in indigenous communities, and to educate non-indigenous people in cultural humility. Drawing upon wisdom modelled on previous grassroots projects in particular the “Star in Your Own Stories” (SIYOS) workshop series we did with Chee Mamuk, our vision is for a flexible model for storytelling and campaigns, a platform for social sharing, and a tool for measuring success on communities’ own terms. www.DrawingWisdomFromTheWell.com.
THE MUSE • SPRING 2017
By Muskaan Sachdeva Art by Katherine Tang
Mountains of bruises from which the red oozes, screaming down the cold fingers. Bold eyes stare. The lips hold the pain, colouring it with smiles. A smile. No one would know if he smiles.
He has dark spots under his eyes— Insomnia, possibly?
Darkness arrives and barely, the dead night survives, murdering shadows with cold fingers. No escape. The belly holds the hunger, echoing his emptiness. Echoes.
A lady in white coat uses known theories to write a note, making careful observations, studying the specimen: Sertraline, 25 mg, once daily. Blood test follow-up in two weeks.
In his head. In his ears. Around him. He hides. He stands alone and welcomes the solitary zone within the cold walls that change. New mirrors. New reflections too. He can’t recognize himself. Nor any family to spot the changes in him. He has gotten thinner— Anorexia, maybe?
He has pale skin— Anemia, conceivably?
Bed rest till normal. “Normal”. He hopes to be “normal” —an alien state. He hopes. With the blade that’s fresh on his right arm’s flesh, he paints broken words, draws mindless wishes like a smiling schoolboy, a “normal” ten year old child. Last words —in red breaths. He dies, dissolves once again.
ABOUT THE AUTHOR - I am currently in my fourth year of the Bachelor of Health Sciences program at McMaster University and am extremely excited to showcase my poetry in The Muse. This poem, Silent Wounds, along with other written pieces, were inspired by instances during volunteering with children from vulnerable family backgrounds.
THE MUSE • SPRING 2017
Play and Levity in a Pediatric Setting By David Langdon “Clowns are the embodiment of hope in the face of hopelessness and possibility in the face of the impossible” ~Jan Hendersen In May 1986, Karen Ridd approached the Child Life department at the local children’ s hospital, with her innovative idea of developing an ongoing program of therapeutic clowning for the patients, families, and staff in that healthcare environment. She had worked and performed as social activist clown “Robo” in the core area of Winnipeg. In doing so, Karen had observed that the children of the city’s core area responded very positively to the non-speaking, childlike Robo. They felt that the clown, when properly introduced and integrated as part of the healthcare team, could have a very constructive presence in the hospital.
surgery in 1971, puppetry on a pediatric closed-circuit TV station with the inauguration of Children’s Hospital Television (CHTV) in 1981, and the creation of specially designed Patient Puppets for medical preparation in 1982. There was such a keen interest generated by “Robo’s” initial presentation to CHTV supervisor, Renee Ethans, that a pilot project was funded. Now in 2017, the Winnipeg Child Life Therapeutic Clown Program is the first and longest running program of its kind in the world.
The medium of clowning was easily assimilated into the goals and objectives of Child Life, as had previously been done with the mediums of puppetry and closed circuit TV. Through Child Life, therapeutic clowning was oriented in a way that differed from other hospital clowning programs, such as the Big Apple Clown Care Unit. Canadian therapeutic clowning was originally informed by the vision and language of Child Life, particularly with regard to concepts such as empowerment, normalization, family-centered care, learning through play, and the importance of unstructured play. To illustrate this point, Karen subtitled a paper she wrote in 1987 “…Child Life Therapy Through The Medium of a Clown”. Play is essential to the character and function of clown. Something that differentiates the clown from most dramatic characters is the lack
Child Life Specialists provide psychosocial services aimed at helping to alleviate the stress and anxiety that children and their families may encounter as a result of their hospital experiences. They also strive to promote optimum development of children and adolescents, as well as maintain normal living patterns. Before Karen’s proposal, the child life department had adapted elements of other art forms into a number of innovative Child Life programs. The most notable among these was the use of puppets to help children cope with the trauma of
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Therapeutic Clowning of a “fourth wall”. The clown is not only aware of the audience, as opposed to a character in conventional drama, but actually engages in a vital play dialogue with said audience. The clown needs both a game and someone with whom to play the game. Child Life Specialists understand that play is essential to children and that the clown presents a “shortcut” to creative, imaginative, and supportive play in an environment that can be overwhelming, frightening, or at the very least, foreign and restrictive. I started my career in 1989 and fashioned my first therapeutic clown, “Hubert”, drawing inspiration from Karen’s Robo. Like the children in the hospital, Hubert is a “fish out of water” who needs a lot of help and instruction. However, the patients get to have a high status relative to the clown, thus subverting the traditional healthcare worker-patient hierarchy. The child assumes the role of the expert, the teacher, or the caregiver. This dynamic also helps to fulfill the child’s need to not only receive, but to give. The child also has the opportunity to be the “voice” of the non-speaking clown as they translate the clown’s kinesthetic mime, which is very similar to young children’s own silent imaginary play, to the predominantly cerebral adults present.
his makeup and costume off he is a little boy again… and then he goes home to mother.” For over twenty-seven years, I have clowned with patients and their families in just about any situation that would bring them to hospital; from children admitted for tonsils and adenoids to those in acute care and even some in palliative care. On occasion, in intensive care or step down units, I have played through a child’s sibling or parents when the patient was too restricted to actually move or respond to the play. In other situations, quadriplegic patients have enjoyed playing “Grand Puppet Master” by dictating exactly what happens: “Now Hubert walks into the door. His hat falls on the floor and when he bends over his kazoo falls too. And now Hubert kicks his hat when he tries to pick it up”. I feel extremely privileged to have shared these times with them. Occupational therapists will often use the therapeutic clown to gauge a patient’s abilities, preferring to see them react in the relaxed context of clown play.
alone in the hospital room with his preteen daughter. Except for the clown Hubert, that is. Hubert was somehow deemed both safe and essential. In 2003, I introduced my second therapeutic clown, “Onri”, who speaks, wears a lab coat, and presents himself as the head researcher affiliated with Banana Nirvana Research and Development. While Hubert is child-like and needs help, Onri is very adult-like and has no idea of how much help he needs. Working with these two separate characters and approaches has expanded the scope of my clowning. In some cases, one clown appeals to a patient but the other does not. Onri is definitely more popular with the older children and adolescents. Some of my chronic or long-term patients like to play the two off of each other by talking about what one clown did yesterday and how the clown present needs to be really really good to top that! Some of them have no idea that I am both characters, while a few do and that becomes our secret sealed with a wink. There are now professional therapeutic clowns working in Canada from coast to coast in pediatric, adult, and senior healthcare facilities. They all have their amazing stories and experiences. In March of 2016, I took Onri with me to Lisbon, Portugal, where close to two hundred healthcare clowns from thirty different countries gathered to celebrate thirty years of this amazing profession. This is a vital, rapidly growing profession with some of its earliest roots situated in Winnipeg. For more information, see the resource: http://www.therapeuticclowns.ca.
It is very interesting how families from cultures where a clown is a respected art performer and a vital part of community life will make One of my favourite such incidents space in the room for the clown. was when a five year old oncology They collectively give focus and sipatient spoke about Hubert. The lent assent for the magic to begin. patient said: Sometimes they will turn chairs about and move furniture and “Hubert is a five year old boy who clothing to construct an impromptu lives at home with his mother. He stage. In these settings, the adults’ goes to the hospital and when he delight in the clown may exceed, if puts on his makeup and costume, not at least equal that of the chilhe grows tall. Then he visits the dren. Once, the father of an Indian children in the hospital and he family new to Canada instructed the makes them happy. When he takes ward that no male clinican could be ABOUT THE AUTHOR - David started his therapeutic clowning practice at Winnipeg Children’s Hospital in 1989 and is an acknowledged pioneer in the field. He clowns three days a week with his two personae, Hubert and Onri, and works the remaining two days as a Child Life Specialist in the Children’s Hospital Television Station.
THE MUSE • SPRING 2017
Radical Mastoidectomy By Shuying Zheng Art by Alice Lu
He cut into flesh straight line on infinite canvas– flash red seeping across the unbroken line A hand wipes– dissects away at open flesh slash slash deeper and deeper breaches fascia and fat adiposity and luminosity golden sheen on blood, then– white of bone stark Buzzing of cautery as wound edges weep char-blackened scent of meat (tummy rumbles, no, no) curling steam and wound seeping weeping heat buzzes as vessels exhale that grey agony wipe, wipe, wipe until clear clear as the sky on dead winter day frozen in that moment in snow – snow like bone waiting for drill
ABOUT THE AUTHOR - Shuying Zheng is a second year medical student at the Waterloo Regional Campus of the Michael G. DeGroote School of Medicine. She is a graduate of the Bachelor of Health Sciences program at McMaster University. Shuying has a special interest in the intersection of the arts and medicine, and she looks forward to integrating the disciplines in her future practice. THE MUSE • SPRING 2017
Sound Body, Sound Mind, Sound Spirit By Star Munro
ment and self-care routines that are experiential, improvisational, engaging, creative, and fun. She now runs SoundBody Studio in Victoria, B.C., offering VoiceWorks and VocalBody Arts classes and workshops for people from a variety of different professional backgrounds and life experiences.
It’s been a long day. You’ve been listening, helping, and supporting clients all day. You’re happy to have been of service, but tired. You can’t quite forget the particularly stressful situation that one of your clients is facing. Your body feels tight, your shoulders seem to be up around your neck. When was the last time you took a deep breath? Working in the healthcare field helping people improve their physical and emotional well-being is a stimulating and rewarding career choice, full of many wonderful and inspiring moments. However, carrying the burden of other people’s needs, pain, and joy results in many healthcare professionals becoming emotionally and physically stressed and exhausted. “Caregivers play this amazing and vital role in society, but they con-
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stantly have to balance their own personal needs with the needs of others,” says Bisia Belina, Registered Massage Therapist (RMT), performance artist, and mother of two (now grown) boys. “Physical and emotional stress changes the way we hold our bodies, the way we breathe, the way we live. Healthcare workers, just as much as their clients or patients, need to find healthy ways to lift the cloak of sorrow and stress that can quickly become all-consuming.” As a busy working mother needing to find her own system for tension release and self- care, Bisia began to experiment and integrate her passions: massage, music, voice, and performance. Recognizing a need for creative, whole-body-centred therapies and expressive vocal training opportunities, Bisia created a system of personal develop-
“The sole purpose of SoundBody Studio is to help others enrich their quality of life, to move to the edges of their comfort zones and re-ignite their passion for life. People need an opportunity to express and shift their emotional state through breath, movement, and sound,” says Bisia. “Whether you are a closet, amateur, or choral singer, dancer, spoken word poet, public speaker, business professional, or health care worker, you can re-discover joy and freedom through music and movement. If you have lost touch with yourself; if you’re consumed by others’ needs; if the stresses of daily living have taken your breath away...come move, breathe, and sing”. Bisia built the framework for this therapeutic program from her training in anatomy, Qi Gong, 18 Postures, Traeger, Feldenkrais, yoga, and belly dancing. She also drew on her experience with improvisational voice, performance art, and music exploration, as a jazz singer and performer. As a result, SoundBody’s unique approach to music/physical therapy incorporates three overlapping systems of body, voice, and movement: 1. Body-Centered: Your body s your instrument. By becoming more aware of and more connected to your body, you improve the qual-
Sound Body, Sound Mind, Sound Spirit ity of your instrument. 2. Voice-Centered: Engaging your vocal mind. The voice is a powerful tool of personal expression. By expanding the capabilities, strength, and experience of voice, you become better connected to self. 3. Movement-Centered: Movement creates the flow of life. By engaging your flesh and bones and space with rhythm and time, you increase opportunities for artistic creation, satisfaction, and enhanced well-being. Many of Bisia’s students work in healthcare. For caregiver Margot Johnston, participation in SoundBody classes transformed her life and overall well-being. Margot now teaches her own classes with SoundBody Studio. “I am a caregiver for my job and I spend a lot of time supporting other people and going through their major life transitions with them. After years of helping others, I found myself starting to shut down,” says Margot. “These classes have given me a way back to awakening. I feel all my feelings fully again. I feel joy in my body. I get to be supported and I’m supporting others. I feel more alive when I come to VoiceWorks classes than any other time in my life and it’s so beautiful.” “My counsellor attended Bisia’s improv singing classes for several years, and felt that her classes would be a good match for me, since she believes creativity is vital to health. Since I love to sing, I didn’t need much persuading to check it out,” says Kerri Hampton, retired school teacher and part-time receptionist with a flair for writing and voice acting. “In each class we sing to our movement and we move to our singing.
We become aware of our posture and our breathing. Moving and singing is a thoroughly expansive thing to do,” says Kerri. “This approach gives me such abundance, fluidity. and truly in-the-moment creativity. It is very powerful to connect with a group through music. Participation in these classes is opening me in new ways and giving me a way of being that is spontaneous and natural without being my usual cautious and controlled self.” “Because each class is improvisational, you do not have time to think,” says student Aurora Valentiny. “I spend way too much time in my head. These classes take me out of my head and into my body. I realize now that my body knows what to do with itself in the moment. By bringing me into my body and into the moment, I feel liberated.” The profound success of SoundBody Studio’s body/voice/movement-centred expressive arts ther-
apy has lead Bisia to develop a teacher-training program and professional development series. With more teachers, SoundBody Studio is able to offer more classes and Bisia hopes to offer training across Canada and perhaps internationally. “This program is successful because it heals the soul. What you learn through music becomes transferable into your daily life— giving voice, speaking up, moving fluidly through time and effectively communicating with others,” says Bisia. “Creating improvisational music and movement is emotionally and physically satisfying, challenging and in-the-moment bliss. It’s a wonderful thing.” For more information about SoundBody Studio, VoiceWorks and VocalBody classes, workshops and programming visit soundbodystudio.ca.
“A poem begins as a lump in the throat, a sense of wrong, a homesickness, a lovesickness” - Robert Frost
Ontology of Empty By Hiba Zafran
Art by Nikesh Pandey
After my own good-bye dinner. Hope laid down Rage muted Love still swirling the pain’s (…) oknotok I stopped waiting for a guide She says He didn’t understand me at all Not one minute in the whole therapy I was five when. she would never love My brother tried tried tried tried tried. tired Haven’t had sex if it wasn’t a violation That someone would want me the only someone he said it was toxic He didn’t understand me at all Not one minute in the whole therapy I’ll share My Doggie died. Took six months for him to go after that ball He was so scared Flattened to the ground I told my ex the ache she felt when he died That is what I feel all the time I am Doggie So, I know (…) intimately Not ache Break. It’s just, if I let myself cry will it be home?
THE MUSE • SPRING 2017
Do you bury her everywhere you go?
GRAPHICS & LAYOUT Creative Director
Dr. Ellen Amster
EDITORIAL BOARD Managing Editor Irina Sverdlichenko
Ishan Aditya Darwin Chan Michal Coret Susan Dong Isabella Fany Eunice Kim Katherine Kim
Ryann Kwann Isabel Ng Bhagyashree Sharma Carolyn Tan Nikki Wong Jim Xie
Amy Ajay Sama Anvari Jessica Blackwood Kelly Dong Mehdia Hassan Lauren Liu
Alice Lu Cathy Lu Adhora Mir Nikesh Pandey Katherine Tang Samuel Wu
EVENTS Coordinators Angus Lee Sarib Malik
Dorothy Qian Yina Shan
ADVERTISING & SOCIAL MEDIA BLOG Coordinator Coordinator Sophie Zhang Members
Matilda Kim Maya Kshatriya
Judy Chen Aninditee Das
Eva Liu Amber Purewal THE MUSE â&#x20AC;¢ SPRING 2017
THE MUSE â&#x20AC;¢ SPRING 2017