Book Review: Helix of Love

Helix of Love is an anthology of poems written by families affected by rare genetic conditions. Funded by a Wellcome Trust collaborative research grant, 'Ethical Preparedness in Genomic Medicine', the process of writing and publishing this collection aims to provide insight into the personal impact of rare genetic conditions. As we move to a more mainstream approach to genomic medicine, how might this impact the individual person, rather than the community level, of patients living with these conditions?

As a creative outlet for sharing the lived experience of rare genetic conditions, Helix of Love is an impactful, thought-provoking publication. The individuals who contributed poems to the book worked with Dawn Gorman, an arts practitioner and poet, to explore poetry techniques and writing prompts that might help them articulate their experiences. Gorman highlights that three poems were used as a prompt for releasing thoughts, and the impact of one poem in particular, Table by Edip Cansever, was apparent to me throughout. Many poems in the book use a table as a metaphor for family; for me, this was a nice hook into the collection. The kitchen table, it is clear, is at the centre of family life, regardless of the wider differences in the experiences of that family.

Instead of reviewing individual poems, here I highlight some themes and ideas that I took away from reading these poems as a collection.

The micro is not the same as the macro

As outlined, the wider objective of the grant that funded this project is to look at the implications of mainstreaming genomic medicine. For rare diseases – as focused on in this poetry collection – it is impossible to generalise the diagnoses, treatments and long-term implications that might be experienced by patients and their families. Reading the author biographies at the end of the book is a snapshot into the differences they face: their children have different, sometimes undiagnosed conditions, but as individuals themselves they have bigger, varied lives and histories outside of caring for children with rare genetic conditions (see 'time out' by Jillian Hastings Ward).

These poems are powerful stories of individual lives: '38 weeks' and '41 weeks' by Alex Davey, in particular, are emotive, richly described personal experiences. As genomic medicine becomes more widespread and has a positive impact on diagnosis and treatment, this collection serves as a reminder that doctors and scientists should strive not to homogenise their patients.

Who is an expert?

A thread that runs through these poems is the medical language that is used by doctors in the clinic. 'Speaking in code' by Lorna Fillingham, 'genetic twins' by Jillian Hastings Ward and 'gattaca' by Paul Arvidson, all use the kind of terminology associated with clinical staff or with scientists writing in medical journals.

I interpreted this in two different ways: First was perhaps the confusion that comes from a doctor giving a diagnosis for a condition that might not have a name or extensive case histories to refer to. But second was the experience that these families have of living with a condition that is not well known. We look to doctors and scientists as the clinical experts in these instances, but when a diagnosis can only be described by the precise genetic mutation is arises from, there might be little information as to what the symptoms or prognosis will be.

These poems are a reminder that a person is so much more than a genetic mutation; while doctors are the scientific experts in these instances, the people associated with the disease are the real-life experts on living with a complex disease, and they must adapt to this language of medicines and mutations.

Hope

Something that was apparent throughout the poems was the theme of hope. After describing a trip to the hospital, waiting for more test results and scans, two lines from 'the day' by Lisa Beaton struck me in particular:

'Next? To the shops! she says brightly

She has bounced back, my rubber-ball girl'.

To me, this description sums up the hope and resilience reflected by many of these poems (about your child, transmutation): a refreshing perspective to take away, given that much of the messaging around genetic diseases might be scary or daunting. I hope this might be a comfort to anyone managing a new rare genetic disease diagnose in their family.

This is a beautiful collection of poems that provides a powerful insight into managing a rare genetic disease diagnosis. I was really impressed by the poems themselves, especially given the contributors had not published poetry before and had limited sessions with the art practitioner before writing them.

Any medical diagnosis can be bewildering and scary, and these poems do a brilliant job of conveying this, balanced by the hope and unexpected joy they have found along the way. It is great to see a medical research grant funding creative projects like this, and I hope these reflections will be considered by scientists and doctors working in genomic medicine in the future.