Answer the Call – A Journey through ALS

I remember sitting at my kitchen table one morning when my phone rang and I had a sinking feeling the person calling me had bad news. One of my very best friends – who is not a phone call-type-of-girl – was calling. I knew this incoming call was important and I needed to answer.

I heard the fear in her voice the minute she spoke. With quavering words, she said, “Sarah, my Dad was just diagnosed with ALS.” My sinking feeling things were not okay was unfortunately right. Through her tears, she explained how he’d been through multiple neurological tests and the doctors officially gave him the raw diagnosis news. My heart broke for her and her family. I wished I could take all this pain and the future pain away, but the truth was – I couldn’t. So, what could I do?

While I understand the pain of losing a Dad, I couldn’t comprehend the walk of watching him suffer. We lost my Dad in an instant, an accident, one month prior to my friend’s Dad’s diagnosis. She had been there for me every step of my journey. Her walk would look different than mine, but we were united by tears. Grief doesn’t discriminate. It touches everyone at some point. I’ve learned who you are surrounded by matters during those times. Carrie Pierson surrounded me and now I will do the same for her because that is what good friends do – we share in each other’s joy and pain.

I, admittedly, had never met anyone with ALS before. ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord, leaving them unable to communicate with the body’s muscles, which then waste away. While scientists have made significant progress in learning more about this disease, they have yet to find a cure. The current outlook of an ALS diagnosis is grim.

May is National ALS Awareness Month – a time to educate friends and neighbors about this disease and help raise funding for future research. An estimated 15,000 to 20,000 Americans live with ALS. Carrie’s Dad, Bruce Simmons, is now part of that estimate. He is currently taking an FDA-approved medication to hopefully slow the progression of the disease. Diagnosed at 69 about 8 months ago, Bruce went from having twitches in his arms to being unable to use his hands. Tasks such as holding silverware and buttoning shirts are now impossible.

If anyone can turn a tough diagnosis into a battle cry, though, it’s Bruce and wife Sue Simmons. Sue has quickly become one of Bruce’s biggest advocates, as well as a fearless warrior in the fight against ALS. “Bruce’s Brigade” is a name that has lovingly been given to all of Bruce’s supporters with Sue leading the charge. Never one to sit still, she immediately started her own ALS support group in their community and organizes speakers to educate new members. She plans monthly lunches for caregivers, so they feel supported as well. Through her efforts, Bruce and Sue were selected to represent the South Carolina ALS chapter in Washington D.C. at the 2019 National ALS Advocacy Conference.

The Pierson/Simmons family stand united with their friends in the tough road ahead. Carrie organized her own ALS support team in Atlanta for a Fiesta 5K benefiting the Emory ALS Center recently. Her brother, Drew is working closely with the Team Gleason Organization. The ALS cause became a family affair turning each of them into hardworking advocates.     

As a friend, I ask myself, how can I support them? While it’s not my battle to fight, I want Carrie and her family to know I’m in this army. The gift of support to someone is priceless. Sometimes, that “gift” you are giving ends up being a gift for you in the end – of connection, unity, empowerment, and love. Support for an ALS family may look like participating in 5K benefit runs, donations, educating others, meals, prayers and sometimes simply answering the call.

If you or anyone you know is suffering from ALS, visit the ALS Association website for support and more information. As we raise awareness of this debilitating disease during the month of May, please consider donating to the ALS Association to help discover treatments and a cure. Answer the call friends.