Intervals is an exceptional book, for which every deserved superlative seems cliched, in part because the language of illness, death and bereavement often feels too hollowed out by use to accommodate the magnitude of those experiences. Frequently repeated words may gain a carapace that resists our scrutiny: take “dignity”, for example, which Marianne Brooker regards with “mild suspicion” as “too clean-cut and classed”, with “none of the chaos that makes us human”.

Jane, the mother of Brooker, faced a lot of turmoil in her life – an abusive relationship with Marianne’s father, unstable and temporary jobs in various fields, and constant financial instability. However, she always confronted these challenges with determination and a transformative spirit. Even when she was diagnosed with primary progressive multiple sclerosis in 2009, she remained resolute and productive. Despite losing her teeth, she learned how to make her own dentures. And as she became more physically unstable, she found a way to continue riding her tricycle by duct-taping her feet to it. She also started giving tarot readings over the phone to be able to work from home. Although she had to pay a fee to the app she used, she found fulfillment and purpose in connecting with her regular clients. Despite being sick and struggling financially, Jane was determined to make the best of her situation.

Jane Brooker was determined to confront her illness in her own way and refused to let external factors control her dying process. This included not only the disease itself, but also the challenges of austerity measures, reduced benefits, inadequate care services, and disability assessments. After living with her diagnosis for ten years, she made the decision to pass away in 2019 at the age of 49, leaving behind a 26-year-old daughter.

She was an experienced advocate for the rights of individuals with disabilities and those nearing the end of their lives. She was aware that choosing to have an assisted death at home, rather than traveling to Switzerland, could result in legal consequences and imprisonment for her daughter who had agreed to provide support. However, she discovered another option that would allow her to pass away legally and openly. By refusing food and water and informing medical professionals of her wishes to forgo life-saving treatment, she could still receive palliative care to ensure a comfortable and painless death.

Intervals centers around the author’s daughter, who writes with remarkable clarity and precision about the period that followed. The reader is transported into the small sitting room, filled with handmade decorations and the music of Leonard Cohen, yet also feels unable to fully comprehend the experience. The author, Marianne Brooker, grapples with familiar internal struggles: constant worry over making the right decisions, moments of hope that her mother will consume something to keep her alive, a desperate longing for the end, and a sense of retreating into a self-created world of imagination. As Brooker reflects, this is the reality of being with someone as they near death and facing the harsh truth that your empathy has limits as you continue to live.

This is an effort to remember and honor a personal loss, while acknowledging the complications that come with it, within the larger context of how society values life. It is clear that different standards are applied based on factors such as wealth, social class, race, and situation. This raises the question of how we can discuss choice. What does a living will mean when living itself and the ability to make decisions are so challenging? Amidst the criticism of specific policies and institutions, such as the Department for Work and Pensions, Brooker argues that we need a more inclusive approach to end-of-life care. This would involve caring for individuals not only when they are in need or nearing death, but throughout their lives.

Rewording: This would involve a significant change in our perception of ourselves as reliant on each other, as having worth that goes beyond our personal, quantifiable achievements and possessions. It challenges us to see care as a mutual exchange, not just a means to offer comfort and ease suffering, but also to embrace our human nature completely. This powerful and heartfelt book serves as an excellent foundation for embarking on such a transformative and imaginative journey.

Source: theguardian.com