This is a memoir viewed through the lens of the 65-year-old author’s recent diagnosis with ALS, her struggle with the progression of the disease, and her discovery of new-found purpose as a champion of ALS advocacy. Her book is the embodiment and capstone of that new purpose. It is intended to inspire anyone with an example of a person and her family struggling with an unwinnable fight; to inform and encourage others engaged in a similar struggle, particular others dealing with ALS; to inform the community of the challenges ALS presents so as to educate them as to the need for changes to the laws affecting research on causes, treatment and cures for rare but devastating diseases such as ALS; and to advocate for the needed changes in federal, state, and local laws and appropriations, as well as to encourage private research and charitable support for ALS patients, their families as well as research and treatment facilities.
The tone includes heartwarming portions recounting the story of the author’s early life, family background and achievements; heartbreaking descriptions of her struggle with the worsening symptoms that went undiagnosed for almost two years, coping with the news of the diagnosis and the ongoing work, commingled with pain, grief and love, that she and her family and caregivers continue to endure as they journey through their lives as ALS has changed it. There are also some brief expository sections that describe ALS and certain legislation that the author supports in the belief that it will ameliorate the lives of ALS patients and their families. The book concludes on a powerfully inspiring and optimistic note, as the author embraces her life and the love with which she is surrounded, buoyed by her own courage to continue to fight “to the last drop of my energy,” as she puts it.
“Sonal Shah has a beautiful spirit that shines through in her writing. She captures a true sense of balance that comes from recognizing the devastation of a diagnosis of amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease, yet moving through the expected and unexpected human emotional challenges to arrive at a place of peace and renewed purpose.”
MS. BARBARA NEWHOUSE
President and CEO, ALS Association
“Since 2011 I have served as Republican Chairman of the Rare Disease Caucus, and during that time I have had the honor of meeting…tremendous advocates like Ms. Sonal Shah and learning more about the challenges they face. I commend Ms. Shah for her bravery in sharing her story. Her commitment is unyielding and inspiring.”
U.S. REP. LEONARD LANCE
United States Congress
Seventh Congressional District of New Jersey
“I have dedicated my entire professional life almost exclusively to ALS and related motor neuron disease…Sonal has been my patient for the last two years. This book is a worthwhile read, as Sonal’s perspective and understanding offer an invaluable source of information to patients who must make difficult decisions regarding ALS care and management.”
DR. HIROSHI MITSUMOTO, MD, DSc
Director, Eleanor and Lou Gehrig MDA/ALS Research Center
Columbia University Medical Center