MDF included a number of authors and artists at the 2017 MDF Annual Conference. Authors and artists hosted tables at the Resource and Vendor Showcase on Friday and Saturday, and a sculptor installed a large-scale piece for display. Read below to learn more, in the authors’ words, about some of the creative efforts of our community members and how to access their publications and artwork.
If you are an author or artist and would like to share your information with the MDF community, email the Foundation.
Overview from the jacket of Rob’s book:
From the time Rob Besecker was a little boy, he was strong. The youngest child in a dysfunctional family, he threw himself into sports at a young age—and found he excelled at them. Athletics became his world, and by his junior year, his mailbox was stuffed with scholarship offers from university football programs from across the US. And then his body started to unravel—and everything changed.
First, Rob fractured his back, ending his college football career before it could even begin. Next, at twenty-six, he began to experience life-threatening heart issues. By twenty-nine, he needed surgery to implant a defibrillator/pacemaker device. Then, when he began to experience aches and fatigue that even his faulty heart couldn’t account for, he discovered he had rare form of muscular dystrophy.
With each new health challenge, Rob was devastated—but not defeated. He had always been strong, and he refused to let his ailing body limit his existence. So he set out to see what he could do—and as he neared forty, he set his sights on the challenge of a lifetime: hiking to the base camp of Mt. Everest, the tallest mountain in the world.
The official release date of Rob’s book is November 14, 2017. It is currently available for purchase on his website at www.robbesecker.com. After the release, it will also be available through Amazon and many other online retailers.
Overview from Jackie Donachie on her art installation, Deep in the Heart of Your Brain:
Deep in the Heart of Your Brain is the title of Jacqueline Donachie’s 2016 solo show at the Gallery of Modern Art, Glasgow, Scotland. This publication centers around Hazel, a key work from that show- a compelling film connecting the experiences of sisters where one sibling has inherited the gene for myotonic dystrophy and one has not, to a wider discussion around relationships, age and appearance.
Donachie has long had an interest in the capacity for artworks to influence research and care in the field of genetics, and has collaborated for many years with researchers in both Glasgow and Newcastle. In this book and in her work, she raises questions around health, ability, and the assumptions made both by “the outside world” and within family dynamics. Art can be a powerful method of articulating lived experience – everyone has a story to tell, to share.
The book contains full transcripts of Donachie’s frank interviews with sisters, as well as a new, commissioned work of fiction by award-winning author Nicola White, and an essay by journalist and lecturer Moira Jeffrey looking at life stories, epiphany and sisters.
This publication is an excellent resource for scientists, artists, families living with myotonic dystrophy, and museums looking at the social and emotional complexities around disability, care, relationships and aging.
Biography provided by Darcy Leech:
Darcy Leech is the surviving daughter of a mother affected by adult-onset myotonic muscular dystrophy and the sibling of a brother who had congenital myotonic muscular dystrophy. Darcy did not inherit myotonic dystrophy from her mother; instead, From My Mother is the story of resilience, faith and strength in what Jo Lyn Bartz gave to her family while her muscles weakened. Darcy is a mother of two, instructional technology coach in the local school district and a small business owner in Great Bend, KS.
Book overview provided by Darcy Leech:
Riveting, soulful, and courageously told, From My Mother is a meditation on grief, family, genetic disease and also a deeply personal account of the narrator's coming-of-age amid medical crisis and tragedy to carry on the lessons from her mother to raise her young son. A story of loss on many levels, From My Mother is a moving book that transforms suffering into art and inspiration.
Leech weaves a beautiful tapestry of the enduring mysteries of what dormant harbingers of genetic disease may lurk within, the surprising possibilities in loss, and the deep resilience of the human spirit as the body weakens. From My Mother leaves the reader pondering the value of genetic testing, the beauty in a disease easy to accept as genetic fault, and the heart wrenching question of when life should be sustained by machine.
To contact Darcy re: her book: https://www.facebook.com/darcyleechauthor/ - any reader should feel free to send her a message.
Book overview from the jacket of Shannon Lord’s book:
Family Roots: A Mother’s Search for Meaning by Marian Shannon Miller Lord is a memoir of a seemingly hopeless revelation of myotonic dystrophy in one of her sons which she traced back to her Hunter roots in Scotland and Ireland. Her long and eventful journey leads her to a life of discovery, reaction and activism.
In her compelling memoir, Family Roots: A Mother's Search for Meaning, Shannon Lord tells the heart-rending story of a family confronting its own genetic messaging. With persistence, insight, and extraordinary courage, she heads down an uncharted path which leads to her discovery that has caused multiple challenges, often debilitating, to generations of her own Hunter clan.
Shannon's gifts as a writer, a mother, and eventually a powerful patient advocate shine through in this book, which explains in gripping detail how one brave woman turned tragedy into triumph. A profoundly satisfying read!
Contact Larry at firstname.lastname@example.org to obtain a copy, or visit Amazon.com and order.
Biography provided by Linda Marshall:
A contemplative writer, Linda A. Marshall, M.Div., is known for giving voice to difficult topics in a heart-felt, vulnerable, and courageous manner. In her inspiring memoir, A Long Awakening to Grace, she narrates her spiritual development during her tenacious twenty-two year search for the cause of her children’s puzzling behavior and for resources to help them thrive once they were diagnosed with myotonic dystrophy.
Book description provided by Linda Marshall:
During twenty-two years of overwhelming obstacles, Linda grew in wisdom and strength as she grappled with her children’s puzzling behavior and searched for the reason behind it. A miraculous gift of grace revealed the source of her children’s heart-wrenching circumstances. A Long Awakening to Grace weaves a tale of heartbreak and triumph. Linda powerfully captures a parent’s sorrow for “what might have been” as well as a spiritual seeker’s reverence for the treasures bestowed in life’s darkest moments. A gripping, heart-tugging, courageous journey into the light.
Biography provided by Ann Woodbury:
I am a petite 61-year-old woman with a lot of energy and passion. When in 1998 my husband and four children were diagnosed with a rare form of muscular dystrophy (DM), I found what motivated me. I wanted to channel my energy and passion into understanding this disease and its effects on my family.
I am also a part-time specialist for Salt Lake County Extension answering nutrition and food safety questions for the county public.
My hobbies include selling Avon, practicing yoga, watching select TV series with my husband, going to plays, making jewelry, cooking foods with good taste and nutrition, yard work, etc.
Book overview provided by Ann Woodbury:
This book is about the Woodbury family's journey with a rare form of muscular dystrophy (DM) - Myotonic Dystrophy. Because this disease affects so many systems in the body and can look like other diseases, it is hard to diagnose. All four of her children and her husband have DM1. Ann’s husband was 43 years old when he was diagnosed; her oldest was 20 and her youngest offspring was 7. Even the doctors didn't know all of the effects of DM. One of the more perplexing effects of the disease is to the brain. Reading this book will take you on her family’s journey of understanding this disease and its effects on her family members.
Contact Ann via email for more information.