Sharing experiences – perhaps reading material that resonates – can be a powerful support tool for us when we experience something extraordinary. There have been a number of publications over the years, written by parents and individuals within our own patient community, but also from other similar myopathy patient communities. We hope you can find something that really resonates and enlightens you from the beginnings of this recommended reading list.
If you can recommend a good book to us which has been particularly helpful, please contact us and we will add it to this alphabetical list:
‘Fragile’ by Niki Shisler
This is the story of an ordinary woman plunged into chaos. After years of abuse and addiction, single mother Niki Shisler had finally found herself with a wonderful new marriage and a perfect baby. When Niki unexpectedly became pregnant with twins life began to spiral out of control with a series of dramatic events. The twins were born mysteriously ill, hanging onto life and, as a family life refocused around the two tiny beings in Great Ormond Street Hospital, Niki learnt that there was always light to be found, even on the darkest days.
‘How I Met Your Father’ by Amina Hart
Born in London to an Australian mother and West Indian father, Aminah Hart was brought up in Melbourne by her gutsy single mum, Helen, and devoted grandparents. Despite their loving embrace, she grew into a rebellious teenager only too aware of racial and social prejudice.
By her early thirties Aminah seemed to have it all – a successful career in advertising, an adoring husband, and a baby on the way. But then she experienced such a terrible tragedy it would broken many people. Somehow, despite her grief, Aminah found the resilient to get back on her feet, only to encounter further tragedy.
After the joy and happiness of giving birth to a baby girl, Leila, via IVF, Aminah contacted Leila’s sperm donor, Scott, to see if he’d be interested in meeting the daughter he helped create. To Aminah’s delight he agreed and Leila and her dad soon developed a close relationship. What Aminah didn’t expect was to fall in love with Scott herself…
‘Living with Centronuclear Myopathy’ by Frank Gadd
A memoir of daily struggles. The Centronuclear Myopathy (CNM) that I have is a late onset condition that leads to general weakness of the skeletal muscles. Where in my youth I could run and jump like any young boy or man, as the condition progressed, I found that I could not run, nor jump, nor even walk anymore. I am now permanently confined to a wheelchair. This is the story of the progression of the disease and the effect it has had on me, my friends, my family, my employers and customers. In fact anyone that has ever come into contact with me. The book is divided into three distinct sections.Chapters 1 – 5 deal with my father, who also had CNM and my youth before diagnosis. Chapter 6 gives a technical description of CNM, the various types and the prevalence of each type. Chapter 7 onwards deals with the shock of diagnosis and how this knowledge changed my outlook on life as well as how my loved ones, my employers and customers dealt with this knowledge.
‘Shared Struggles: Stories from Parents and Pediatricians Caring for Children with Serious Illnesses’ by Ann F Shrooten and Barry P Markovitz
This book tells true and poignant stories from both sides of the physician-patient/parent relationship and provides a unique glimpse into how parents and physicians think, feel, and interact. The stories are grouped under four sections: Hope, Compassion, Communication, and Trust. Each section includes stories contributed by parents from all across the United States and by pediatricians practicing at many of the best children’s hospitals throughout the country. The parents tell of interactions with physicians that had a significant impact on them and their child and offer context and insight that promote empathy and reflection. The physicians tell of interactions with patients and families that served as learning moments in their career and promote the humanization of medicine and show there is more to a physician beyond their scientific knowledge and white coat.
In addition to being a valuable resource for pediatricians, pediatric subspecialists, nurses and other healthcare professionals, the book will also appeal to families of children living with complex medical conditions because it shares physician encounters and behaviors many have experienced in the care of their own children. By giving a voice to both parents and physicians, the goal is to create a bridge to better understanding that can improve communication, minimize conflicts, and foster trust and compassion among physicians, patients, and families.
‘The Time of Her Life’, by Leslie McIntyre
Photography, poetry and a biography about Molly McIntyre, a young girl with centronuclear myopathy.
The end of a great life should be as celebratory as its beginning. Both stages are inevitably linked. It is how a human being engages with the middle bits that reflects who they really are.
This book is about how to live with no guarantees. In other words it is about what everyone deals with but pretends that they don’t.
‘Through My Eyes’ and ‘Momma Gave Birth To Greatness’ by Joey Wells
The first book is a collection poems and the second a double album of songs.
Joey said ‘Having my family and friends support me through my ups and downs with [Myotubular Myopathy] Muscular Dystrophy, have allowed me to go after my dreams. As you can see, having a disability has not hampered my ability to attain my goals. From hospital stays to playing tee ball, to working with MDA, to attending college, the journey of my life has taught me a lot. I am blessed to live the life that I live. Having a disability has shown me the true beauty of life. That is what I want to share with you.
Bereavement Books for Supporting Children and Young People
Please visit Child Bereavement UK and Winston’s Wish for helpful signposting and more information about suitable books and tools to help open up the subject of child grief.
