Language: English

“A Deep and Hollowing Pain”: Parents Share Stories of Caring for a Sick Child

The article compiles brief quotations from interviews with parents sharing their experiences and lessons learned while dealing with their children’s cancer diagnoses. The parents express the shock and emotional turmoil upon receiving the news, describing the physical and emotional impact of such moments. The struggles include grappling with the unfairness of the situation, the abrupt disruption of daily life, and the challenge of balancing personal well-being with the demands of caregiving.Some parents reflect on how they coped with the stress, sharing coping mechanisms such as engaging in activities with their children, seeking support from friends and medical professionals, and finding moments of joy amidst the pain. The article emphasizes the importance of self-care and highlights the physical toll that prolonged stress takes on caregivers. Although the quotations are very brief, and we don’t know much about the individuals who contributed them, they are interesting to consider as micro-stories or story fragments; taken together, the collection provides varying perspectives and voices of parent experience.

Being Heard: Empathetic Artistic Interpretations of Young People Living with Serious Medical Conditions

The “Being Heard” project explores how artists can help young adults with serious medical conditions feel understood and cared for. Young adults worked with a team that included a nurse researcher from The Institute for Integrative Health, an art therapist/social worker, and two professional artists. Each child wrote an “I Am From” poem and then participated in an interview with an artist, who created a painting and accompanying narrative based on what they heard. The nurse researcher and art therapist then shared the painting with the child, asked for their thoughts and feelings, and offered an opportunity for the child to create a watercolor print.

The exhibition at the Children’s National Medical Center included eight paintings by patients between the ages of 10 and 19; the booklet from the show also includes the art work, poems and children’s responses.

The Washington Post ran a story on this project, available at this link.

Children’s art as visual narrative

This article about visual narrative highlights the effectiveness of non-verbal expressive arts like drawing, painting, and constructing as therapeutic and restorative experiences. Trauma survivors, including children, may find it challenging to articulate their experiences verbally, as trauma can impact the brain’s language centers. The article contrasts previous approaches that encouraged forgetting traumatic events with the current understanding of the importance of acknowledging, validating, and providing mental health intervention for survivors, allowing them to tell their stories through creative acts. The article references the project “Forced to Flee: Visual Stories of Refugee Youth from Burma,” which compiles a book of art expressions by young refugees (a page for the kickstarter campaign for the project was available as of 12/20/23 at this link). The project showcases how visual narratives, conveyed through art, can tell powerful stories, open hearts, and build bridges of understanding. By honoring the visual narratives of youth, the project not only raises awareness about human rights issues but also offers a glimpse into possibilities for reparation and redemption for young survivors.

Neurodiversity Poems

This anthology houses a multitude of poems related to neurodivergence. The authors all have different backgrounds as this is an open site where anyone can publish their work. The site is searchable and poems are tagged. Some examples include a poem about masking, the perception of “normal,” and “praying for a neurotypical brain.” One poem details an individual’s experience with growing up and feeling like they constantly are on the outside looking in and having to hide aspects of themselves to fit in. This site could be utilized as a resource for creative writing in terms of neurodivergence. As poems from personal, first hand experiences of neurodivergence, they provide insight as to the nuances to individual experiences that caution us against generalizations and stereotypes.

Autism and Neurodiversity: Different Does Not Mean Broken.

In this TedTalk, Adriana White (librarian, former special education teacher, and author) discusses the idea of neurodiversity. She was diagnosed with autism and anxiety in her 30’s and now advocates for inclusive schools and libraries. Her talk includes stories of her own autistic experiences, including how others labeled and made fun of because of the way her brain works. This video could be utilized as a tool to investigate how medical diagnoses elicit certain stereotypes and biases, such as being denoted as a “weird” kid. Additionally it could be used as a way to create dialogue surrounding the cultural and societal norms that surround the ideas of being “normal” as well as raising questions about accommodations in the built environment and the social model of disability.

Neurodivergent Narratives

Sandra Coral is a student, teacher, writer, podcaster, and learner all about neurodivergence. They have multiple social media sites (instagram, twitter, Facebook) that are publically accessible and focus on promoting education and awareness about neurodivergence. She is autistic and has ADHD and shares her own experiences via through written posts, videos, and podcasts on topics such as sensory processing, fitting in, masking, and burnout. Sandras’s sites could be utilized in a classroom setting as narratives from someone who is neurodivergent told in their own voice. The link below is to the Facebook page, where the About profile provides links to other platforms. Her social media posts are useful not only for discussing neurodivergent narratives, but also for reflecting on what constitutes a narrative (small individual posts retelling everyday life? the accumulation of posts over time?). In contrast, her Substack includes longer posts that more clearly resemble stories.

Mental health Poems for Teens

The Poets.Org website of the Academy of American Poets has curated this collection of 14 poems related to mental health that were selected for teen readers (part of a series of “Poetry for Teens” on various topics). Some themes throughout the poetry are depression, anxiety, as well as hope and resilience. Each poem includes a description of some of the themes within it as well as details about the author. The pieces span a range of time periods and a variety of authors with different backgrounds including, for example, Emily Dickinson and Sylvia Plath, as well as Naomi Shihab Nye and Ada Limón.

Community Conversations – Epiphany’s Story

In this short video posted by the Medical College of Wisconsin, Epiphany Gold, shares her experience with depression. As the pandemic started, Epiphany struggled with her mental health due to the isolation, losing her mom, and failing her nursing exams, something that had been an anchor for her. Epiphany shares how she no longer felt like she could continue to go on, not even for her child which was the sign that she needed to go therapy. She reflects how she feels therapy saved her as well as her life. This video engages with the topic of what it means to be in relation to others, specifically your child, while struggling with mental health. This video could be used to explore ways in which systems, or the lack thereof, of social support aid in the general well being of people, especially in regard to mental health.

Personal Stories of Mental Health

Black Dog Institute is a nonprofit organization dedicated to medical research related to mental health. This online collection houses 18 different stories related to mental health (including bipolar disorder, PTSD, anxiety, depression), each representing the lived experiences of those who wrote them. Each story has a short description. A majority of the stories are from patient perspectives while some of them are based around a provider narrative. Since the themes throughout the stories vary so much, this site could be utilized in any syllabus focused on mental health. Such stories show the personalizing of diagnoses as well as show variability in how they are experienced, which can help to expand the general notions and stereotypes that are held around mental health

A Body, Undone: Living on After Great Pain

“A Body, Undone” is a memoir by Christina Crosby, an English professor chronicling her life after a paralyzing cycling accident in 2003. A respected English professor at Wesleyan University, Crosby explores the physical and emotional pain of her disability through a critical feminist and queer thinking lens. She puts into words the experience of life in a broken body that seems beyond the reach of language and understanding, discussing how we construct a livable life in the midst of unimaginable pain. She situates her personal narrative within the broader social critiques of care labor and the financial burden of disability and injury within the current economic systems and structures in the US. The novel would be relevant to disability studies and feminist theory, but its prose that is rooted in humanity and the events of daily life function to make it accessible to a general audience . This book is a patient narrative that challenges the dominant discourse of disability, and could be relevant to discussions about disability, pain, and care and its intersections with gender, sexuality, and class.