12 Impactful Books for People Facing Rare Disease
By: Laura Will
Since my son Alden’s diagnosis I have been consuming books at a personally unprecedented rate. Part distraction and part self-help, I have found reading the experiences and wisdom of others to be immeasurably important as I find strength to survive and thrive despite being forever in the grip of a rare diagnosis. The books I have been drawn to fall into three categories: memoirs, resilience, and mindfulness.
In memoirs I have been able to myself in the stories of others. I have been guided by their experiences in deeply personal ways. As I looked to consciously shape my own journey I became fascinated with the concept of post-traumatic growth, and focused on strategic ways of cultivating resilience. And finally, I found mindfulness and a growing sense of spirituality as central to finding grace and acceptance in my son's diagnosis and our new family trajectory.
These books are the ones that have affected me most powerfully this year. I would love to hear any recommendations from you!
MEMOIRS
Raising a Rare Girl: A Memoir
by Heather Lanier
This is a BEAUTIFUL autobiography by a mom raising a girl with rare genetic deletion. She was a poet before she became a mom, and the writing is truly extraordinary. This book has been shared between friends and family members, and has been an accessible way for others to understand a bit about our journey.
Jabberwocky: Lessons of Love from a Boy who never spoke
by Dr. Steven Gardner
This physician father’s memoir speaks to the uniquely TENDER CONNECTION of parent and child, the uplifting communities within special needs, the act of giving back to make meaning, and the spiritual journey in bereavement.
Schuyler’s Monster: A Father’s Journey with his Wordless Daughter
by Robert Rommel-Hudson
With nimble wit, a father tells his story of LEARNING TO TRUST and heal himself to become a TENACIOUS advocate for his daughter through diagnosis and disability.
Harnessing Grief: A Mother’s Quest for Meaning and Miracles
by Maria J. Keralas
A warrior mother’s courageously honest account of unspeakable loss, she spares no detail in her generous and valiant descriptions of defiant determination, bitter rage, and profound love.
Chasing My Cure: A Doctor's Race to Turn Hope Into Action; A Memoir
by David Fajgenbaum
A doctor who experiences a life threatening disease goes on a journey to find his own cure. He describes hope as active, using his book to express the importance of doing the WORK to make silver linings glisten. You can read more about his work and mission on the Know Rare blog here.
RESILIENCE
Bouncing Forward: transforming bad breaks into breakthroughs
by Michaela Haas
This is the best sort of self-help book for people facing trauma. Enjoy some awesome perspective through incredible stories of post-traumatic growth paired with scientifically validated strategies for sustained strength.
Rising Strong: How the Ability to Reset Transforms the Way We Live, Love, Parent, and Lead
by Brene Brown
Brene Brown is a joy to read. While sickness and trauma are not central themes, the lessons here are valuable to sustaining a family through all the curveballs that come our way.
Option B: Facing Adversity, Building Resilience, and Finding Joy
by Sheryl Sandburg & Adam Grant
Part memoir, part strategic post-traumatic advice, this book is the most easily digestible book about grief I’ve ever read.
MINDFULNESS
True Refuge: Finding Peace and Freedom in Your Own Awakened Heart
by Tara Brach
An authentic and unpretentious spiritual guide, Tara makes mindfulness accessible to all. Her website and podcasts are also wonderful resources.
Comfortable with Uncertainty: 108 Teachings on Cultivating Fearlessness and Compassion
by Pema Chodron
A brief, approachable and often humorous collection of wise words for today’s world.
Practicing the Power of Now
by Eckhart Tolle
A spiritual classic, teaching grace, ease and lightness.
The Wild Edge of Sorrow: Rituals of Renewal and the Sacred Work of Grief
by Francis Weller
Essential guide for navigating the deep waters of sorrow and loss in this lyrical yet practical handbook for mastering the art of grieving.
Laura Will is a mother to two young children. Alden, her younger child, has diffuse bilateral PMG. She and her husband David Nicholson live on Cape Cod in Massachusetts. As a family they love spending time by the ocean, and biking to the children’s library and ice cream shop in town. Locally Laura is working with Cape Cod Children’s place, establishing a group supporting parents of medically fragile and/or disabled children.
Laura volunteers as a part of Massachusetts General Hospital for Children Storybook Ball committee, a contributor to Courageous Parents Network, and a volunteer for Polymicrogyria Awareness Organization. She also serves as Know Rare’s nurse trainer for our Patient Advocate Support Team.
Her career started as case manager for adults with disabilities, after which she attended Columbia University, graduating with a Masters in Nursing. As a nurse practitioner, Laura worked in geriatric and palliative medicine. Since Alden’s diagnosis, Laura has studied and been practicing mindfulness based therapies. Her personal creative outlet has become poetry, a powerful tool for expressing her joys and sorrows.
