February 6, 2014, by Todd Neva
“We read to know we are not alone,” the character, C. S. Lewis, said in the movie Shadowlands.
In June of 2010, I was diagnosed with ALS. Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a progressive neuro-muscular disease that results in total paralysis and eventual death, usually in three to five years. In our grief, my wife Kristin and I were comforted by books written by others who face grief and disability.
In addition to reading, we wrote of our thoughts, feelings, and experiences during the year after the diagnosis. Kristin wrote in her journal and we both blogged.
Our writings have found their way onto the pages of a book, Heavy, Finding Meaning after a Terminal Diagnosis, A Young Family’s First Year with ALS. Many other books tackle the topic of facing a terminal disease retrospectively, often from the spouse’s perspective, or from the patient after some time has passed. Heavy, instead, follows the gut-wrenching first year after the diagnosis. Our story is told from my perspective with journal entries by Kristin at the end of each chapter.
We read that, when facing ALS, it often takes a year for some sense of (new) normalcy to return. We couldn’t write this book today; it could only have been written when the emotions were raw. And it is our hope that our story will help you—in your suffering, in your grief—to know you are not alone.
Please check it out, and if you find it encouraging, we would appreciate if you would write a review.