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Living in the moment with ALS

Living in the moment with ALS

We rode in silence. I glanced at the clock as we came to another stoplight. Already five minutes late, I assured Amy they couldn’t start without her. 

“Don’t worry. We’ll get there when we get there,” I said as she stared out the passenger side window. Her white lacy gown filled up the car, blocking my view of the gearshift. 

We drove past the small primary school we attended. We passed the daycare where we met when we were 3 years old. We drove past the Methodist church where we went to Vacation Bible School during the summer and where we buried her grandmother and her mother. We passed her childhood home where we rode four-wheelers up and down the dirt roads and where we played in woods that had been scooped out during the gold rush.

Finally, we pulled up to the old farmhouse on the hill bearing her family’s name on the sign — The Stovall House, tucked away in the valley of Sautee, Georgia. She let out a heavy sigh. I couldn’t be sure if it was relief or dread. 

“You know it’s not too late to fly to Vegas,” I said. “Just me and you.”

She finally smiled and let out a nervous laugh. I could always make her smile — even through some of the most trying tribulations of our 30-year friendship — but these days it has become more rare. She may fake a smile for you, but it’s not the genuine light up a room smile I’ve known. 

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Many lighthearted moments together have been replaced with anxiety and uncertainty since Amy was diagnosed with ALS (Lou Gehrig’s Disease) last June. By that time, she had already experienced complete muscle weakness in her right hand and arm and it was quickly progressing to her left hand and arm. It wasn’t until she started having leg stiffness and spasms that the doctors finally decided it had to be ALS. 

Amy drove the two hours to Waynesville to tell me. I just couldn’t accept it. How could this happen to a perfectly healthy 33-year-old woman with her entire life ahead of her? The initial shock started to wear off over the coming weeks and the reality began to set in — my best friend is fighting an incurable disease. 

I went to the ALS Association website to research and prepare myself for the journey ahead. I wanted to know what the latest treatments were and find a glimmer of hope amid the overwhelming feeling of dread. That’s not what I found. All I found were more hard truths about ALS. 

Doctors don’t know what causes ALS, why the nerves in the spine stop communicating with muscles in the body. As the muscles throughout the body weaken over time, ALS patients eventually become completely paralyzed to the point where they can’t walk, eat or breathe on their own. Someone is diagnosed every 90 minutes with ALS, and the average life expectancy after diagnosis is two to five years. As I said earlier, there is no cure. 

So, how do you find hope after reading that? I found hope through seeing Amy’s resolve to live her life. Amy and I have always had a love for traveling, though our big dreams of seeing Europe had taken a backburner to our jobs and families. But within a month of her diagnosis we booked an 11-day trip to London, Paris and Rome in September. Before that, she and her boyfriend Chris flew to St. Martin for a Caribbean getaway. A few months after we returned from Europe, Amy and Chris traveled to St. Lucia, where Chris proposed. As I write this column, the two of them are newly married and traveling around the coast of Ireland together. 

The everyday stuff hasn’t been easy — doctor appointments, prescriptions, battles with the insurance companies, wheelchairs and walkers, falls and broken bones, plenty of tears and panic attacks — but we’re taking it one day at a time.

If nothing else, ALS has taught us to persevere and live in the moment. Life is too short and unpredictable to put things off or dwell on what we can’t control. When you live with ALS, there will be no better day than today. So, you make time for your family, go out with friends, take the risk, plan the trip, live, laugh and love whenever you get the chance.

May is ALS Awareness Month, and I know if this column could inspire you to make a donation to the ALS Association, it would make Amy smile. Learn more and donate at www.alsa.org.

(Jessi Stone is news editor for The Smoky Mountain News. Reach her at This email address is being protected from spambots. You need JavaScript enabled to view it.)

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