I just ordered “A Journey Through Fire: ALS–Memoir of a Caregiver“ written by local author and caregiver, Shirley A. Knight. She chronicles the hard, arduous battle she and her husband, Bill, faced along his journey with ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease). With a background in nursing, she details the struggles with insurance companies , the strength she found in God, and the solace she found in friends and church family. However, in the end, the book is also about her own survival and learning to live after the death of a loved one.
Her story is of interest both from a professional perspective as well as a personal one since my own grandfather died of ALS before I was born. I never got to meet him, though I hear stories from my 91-year old grandmother about his days working on the railroad, how he courted her on the front porch swing that I now have at my own home, and how one afternoon they eloped (as she assures me most kids did “back then”) only to go back to their own homes and wait until the next day to tell their families. I wish that I could have known him and that he could see how his 9 grandkids and 14 great-grandchildren turned out.
My grandmother sacrificed greatly to care for him while raising my then-15 year old father. As I’m sure this book will reveal, caregiving is not always a joy. Caregiving is sometimes the hardest thing one can do, the ultimate demonstration of selflessness as you wade through unchartered waters, in their case knowing not that you can change the disease, but that you can change the life of the one affected by it. You can help that person have dignity and comfort in their final chapters. You can stand beside them and be their strength as they learn to let go of this world little by little.
According to Mrs. Knight, A Journey Through Fire is written, “as a testament to God’s promise…I have learned that life, with all its uncertainties, somehow manages to go on; that strength and courage exist for our trials beyond what we believe to be humanly possible. It has taught me that God is faithful. Even in his silence, He showers us with blessings“.
The ALS Association is one of those blessings. Thousands of families turn to their local chapters seeking information, resources, and assistance as a loved one is diagnosed with this ugly, deadly disease. This association advocates for those with ALS and is one of the world’s largest funders in research for a cure. According to their Web site, 15 people are diagnosed with this disease each day in the United States, typically between the ages of 40 and 70. It indiscriminately affects over 30,000 Americans, regardless of race, socioeconomic background, or medical history and robs them of their future, with 80% dying within the first 5 years. But the ALS Association is hopeful for medical advancement that will lead to a cure.
I hope you’ll join me in reading A Journey Through Fire (which you can buy here); you can also read Mrs. Knight’s interview with our community paper that introduced me to this book. Though Mrs. Knight provides great insight to the trials of ALS, you can help rewrite the ending in our fight against ALS.
Get involved in your local ALS chapter, be it through a donation, participation in a fundraiser, or even volunteering. Knoxville’s annual Walk to Defeat ALS is coming up September 24th. To find one in your community visit the ALS Association, where you can find local events and help change the world.