Help us raise money to find a cure for ALS!
|Event:||Grand Rapids Walk|
|Date:||Sunday, September 10, 2023|
|Team:||Bob's Muscle Team|
JOIN OUR TEAM AND/OR DONATE
We are walking to make a difference in the lives of those affected by Lou Gehrig’s Disease. Please join us in the fight against ALS by walking with us in the Walk to Defeat ALS® or holding our hands in this cause.
The Story of Bob's Muscle Team
In December of 2011, my husband Bob and I lived in Illinois where we were professors at two different universities. During final exam week that year, Bob told me he had made an appointment with our primary care physician because he had a twitch in his arm. I looked at him quizzically because it seemed to me a strange reason to make an appointment with a doctor. At the time, I knew nothing about neurological disorders or ALS. “It doesn’t stop,” Bob said.
When Bob went to see our family doctor, she immediately sent him to see a neurologist. That neurologist immediately sent him to see another neurologist in the nearest large city to us: St. Louis. By the end of December, Bob knew he had ALS, even before the doctors were willing to diagnose him. We had two young children, then eight and three.
The kids and I lost Bob ten months later in October of 2012. Bob was forty-four. Our grief was so heavy that I could barely keep myself and the kids together in the beginning. I couldn’t yet imagine having the emotional or physical energy, or the time, to do more than I was doing. All of my energy had to go into ensuring the kids and I would survive.
It took until 2015, when I remarried and moved to Michigan to take a new university position, that I could even consider participating in an ALS Walk, but I knew then that for the rest of my life, I wanted to help those fighting ALS.
So, in 2016, my husband Dave, the kids, and I began walking in the Grand Rapids ALS Walk in memory of Bob, to help those living with ALS, and to support research for a cure. Our family has been walking every year since. Our team is small but mighty. We are Bob’s Muscle Team.
After Bob was diagnosed, he decided he wanted to write a book of poetry; he was a philosophy professor, but he became a poet during his illness. His book is titled After Lightning: Poetry from the Edge of Fatherhood and ALS.
I am a poet, writer, and writing and literature professor at Ferris State University. Some of my poems about Bob and his illness and are in my book, Have Love (2019). As the last surviving member of my immediate birth family at the age of thirty-six, I have also written a book of short fiction stories about grief, The Grief Eater (2020). While my poetry and fiction both address themes central to my life—love, happiness, grief, and survival—I also wanted to write a memoir about Bob, our journey with ALS, and how we decided to join hands, raise glasses, and celebrate our lives together during the brief time we had left. I actually began writing that memoir while Bob was still very much alive, but it wasn’t until years later that I was able to dedicate myself to finishing it.
On November 1, 2022, Find a Place for Me: Embracing Love and Life in the Face of Death was published by Regal House Publishing. A portion of the royalties from the sales of this book will be donated to the ALS Walk or the ALS Association each year.
Tell your stories, write your stories, love deeply, and remember your loved ones. Please join us in the fight against ALS.
Why the ALS Association Needs Your Help
Often referred to as Lou Gehrig's Disease, amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis.
Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.
This crippling disease can strike anyone. Presently there is no known cause of the disease yet it still costs loved ones an average of $200,000 a year to provide the care ALS patients need. Help make a difference and donate or join a walk today.
THANK YOU for helping us reach our fundraising goal!