Tag: terminal illness

Family Stories of Tay-Sachs Disease

The Cure Tay-Sachs Foundation website contains many resources including information about the disease, carrier statistics, family stories, research initiatives, and fundraising opportunities. Tay-Sachs disease is a rare, fatal genetic condition that destroys nerve cells in the brain and spinal cord primarily in babies and young children. It has a history of affecting people of Ashkenazi Jewish descent but now is seen in other ethnic backgrounds. If you click on the “family stories” tab, you can view over twenty personal narratives of children who were diagnosed with Tay-Sachs, often written by parents. The stories are divided into three short sections documenting the journeys from when they first realized something was wrong, how the illness progressed, and what the family’s ultimate decision was in how to handle it. One of the stories is told from the perspective of an adult with late onset Tay-Sachs as well as bipolar disorder, and she describes the experience of dealing with both conditions simultaneously. Another feature of this website to explore is the “drawings of our kids” tab. You can click on any of over fifty names to see an original drawing of children who have died from Tay-Sachs, all drawn by one of the grandfather of one of the children. The family stories would be a very impactful reading assignment in a course about genetic diseases to increase awareness about the many different ways the same disease can affect individuals and families. It could also fit into a bioethics course to prompt discussions or even essays on if/when it is ethical to stop providing treatment and medical intervention for a patient who has a terminal illness with serious impacts on quality of life for the patient and family.

ShayShitsinaBag TikTok Channel

Shay Haberstroh, via TikTok, shares their story with Crohn’s disease and an ostomy bag. She talks about doing daily tasks, her love life and marriage, personal relationships, and even makes fashion and cosplay videos for people who have an ostomy bag. Her story explores chronic illness and disability, mental health, as well as what it’s like to face the idea of death as a young person. One of her viral videos shows her, shocked, with a caption that says, “realizing i’ll shit into a bag forever.” She then brings in humor and relief with the caption, “my asshole will be permanently clean.” She explores an issue that people don’t often talk about, bringing comfort to the conversation of body-differences and life saving medical devices, like an ostomy bag. She makes chronic illness an accessible and humorous topic on a platform that lots of young people use, fighting shame.

This TikTok account could be used to explore the use of different platforms for storytelling and advocacy. It could be used to discuss normalizing bodily differences, and the importance of making stories accessible and potentially, humorous. As well, healthcare professionals could benefit from watching these videos, listening to Shay’s critiques of the healthcare system, and evaluating how they could change their practice to accommodate more people and their individual experiences.

She gives great examples of how people with invisible illnesses, as well as women, are often overlooked in the healthcare system. Many of her videos are skits that she creates, acting out scenarios where she was treated poorly in healthcare or not listened to by doctors, despite the fact that she has a serious illness.

Dying: A Memoir

Cory Taylor’s memoir, “Dying: A Memoir,” confronts the profound questions surrounding death and the pursuit of a dignified end. At the age of 60, Taylor was diagnosed with incurable cancer, propelling her into a realm where death was an uncomfortable, often ignored reality. Having witnessed her parents’ agonizing decline into dementia and death in nursing homes, Taylor was determined to approach her own mortality differently. Fueled by a desire for a better death, she started on a journey that led her to become an ambassador for the dying. In a society that often shies away from discussing death, Taylor explored the silence surrounding it, describing it as a “monstrous silence” that leaves individuals facing death feeling isolated.

The memoir raises important questions about the medical profession’s reluctance to discuss death, the prioritization of expensive cancer treatments over palliative care research, and the influence of religious groups in the debate on assisted dying. Taylor herself contemplated assisted dying, even ordering a euthanasia drug, but struggled with the decision due to the absence of a supportive legal framework and concerns about the impact on her loved ones.What sets Taylor’s memoir apart is her lack of self-righteousness. She doesn’t embark on a spiritual journey or offer easy answers. Instead, she explores the complexities within her own family, highlighting irreconcilable rifts and exploring the history that shaped her.

The narrative weaves together scenes from Taylor’s life, from her childhood experiences in Fiji to her first recognition of desire and mortality. Throughout, she emphasizes that life’s messiness is its own reward, challenging the notion of a neat, happy ending. Cory Taylor died shortly after the book’s publication, leaving behind a legacy that reflects her quest for a good death. While the book doesn’t provide a definitive conclusion, Taylor’s peaceful death surrounded by family suggests that, in some ways, her desire for a dignified end was fulfilled.

This story could be used as an example of a patient’s personal narrative of dying in any class that addresses issues of aging and dying. This book could serve as a strong and vulnerable patient narrative for a course in healthcare that wants to address narrative medicine, raising questions of what makes a good story, what doesn’t get talked about, and how many factors and narratives shape the reality of death.

Heather McQueen: Dignity in Dying

Heather McQueen, deeply affected by her mother Sheena’s inhumane death from terminal cancer, has committed herself to advocating for legal changes surrounding end-of-life choices. Sheena endured a rare form of anal cancer and faced the intense physical toll of radiotherapy, leaving her with third-degree burns. As her health deteriorated, doctors discovered a stomach-blocking tumor, eliminating treatment options. She spent her final week in the hospital, unable to return home due to the discomfort of the ambulance trip. Heather believes that at that point, her mother should have had the right to choose to die. Heather reflects on her mother’s life and expresses her resentment to the legislation that denied her mother the right to a dignified death.

This narrative can assist a class in unpacking the impact of legislative choices on individuals and families. Discussions can include the role of advocacy in shaping public opinion and influencing legislative changes. This narrative provides an opportunity for students to examine the complexities of patient autonomy, compassion in healthcare, and the potential consequences of restrictive end-of-life care options.

Living with Huntington’s Disease

This is a five-minute video narrated by a 46 year old woman who acts as an in-home caregiver for her father, who has Huntington’s disease, a terminal genetic disease that children have a 50% chance of inheriting from their parents. She describes the disease as “having Alzheimer’s, Parkinson’s, and ALS all together.” Panning from the bedroom to the kitchen, the video follows this woman throughout routine moments of taking care of her dad, such as getting him out of bed and feeding him. In between clips, statistics and factual information about Huntington’s are flashed on the screen. Recently, she found out she had the gene and is beginning to get symptoms herself, but is in a clinical trial for a drug. This is a very moving, emotionally impactful video that also provides a lot of basic information about what it is like to live with Huntington’s and take care of someone who has it. It is rare to find such a nuanced blend of the emotional and the informational, as well as a perspective of a person taking care of someone with the very same disease, just at different stages. It would be useful to play for discussion material in a class about genetic diseases or family members who act as caregivers or in a discussion about how personal narrative and statistical information can be combined to communicate a message. It could also be used as an example video in an assignment for students to create narratively infused informational interview videos about a certain disease.

Mercy

Through beautiful description and comparison Selzer writes about an interaction between a patient, his doctor, and his family at the end of his life. In the story, the patient is in the hospital, suffering and in pain. This piece serves as the doctor’s narrative, as he, too, suffers in deciding how to ease his patient’s pain, which can only be done by euthanasia. The doctor deliberates back and forth about the options and ultimately gives the patient what should be a fatal dose of morphine, yet still, he does not die. This piece raises questions about medical ethics, listening to patients, listening to families, and making informed decisions in healthcare.

This narrative could be used in courses regarding medical ethics, death, medicine, and narrative medicine. This piece could prompt discussion about medical ethics, who gets to make choices, and why certain choices are made in healthcare. It can be used to show the place of creative writing in medicine, as it provides a creative account of an interaction between a doctor and a patient.