I met Ron and Donna Smith in September 2015, when she could still turn her head.
Sissy, as she’s known to differentiate among other Donnas in her family, had lost the ability to speak. On a special computer, using eye movement to select letters, she formed words and pieced together abbreviated sentences. It was painstaking work.
“Good days and bad,” Sissy spelled out to members of Harris Regional Hospital’s palliative-care team, now disbanded.
Her husband and the doctor’s conversation turned to problems with her catheter and about how to control bladder spasms she was experiencing.
Sissy added, or the computer did: “gets to me pretty bad sometimes.”
Her husband massaged her feet as he talked with the doctor. It was painful to watch and a beautiful thing to see.
The Smiths were, by that time, a few years into their nightmare journey with ALS, commonly called Lou Gehrig’s disease.
Amyotrophic lateral sclerosis.
This degenerative disease progressively paralyzes its victims. Over time, ALS sufferers lose their ability to walk, speak and move. Sissy’s mind seemed unaffected, her personality still intact.
ALS consumed Sissy and Ron’s lives. ALS devoured large portions of their sons’ childhoods.
ALS could not steal her innate dignity, his devotion, their shared love for the two boys.
For as long as possible, Ron fought to keep life the way it had been, before Sissy became ill. He outfitted a school bus to allow the family to vacation in state parks.
“Bumps bother her bladder,” he told me. “Besides that, we just strap her down and do the best we can.”
They resisted isolation.
Through social media, his wife kept in touch with friends. Their church congregation sometimes held night services in the couple’s home.
Monday, I called Ron. He was by his wife’s side. Sissy no longer can be cared for in their Balsam community home. She is likely to spend her remaining days in a Hospice center.
How much time is left? I asked.
Who can say? She doesn’t eat, Ron said.
Half of ALS victims live two to five years following diagnosis. It will be six years this October.
Inanely, I ask: “How are you?”
“I never leave. It’s 24/7. I sleep in a bed next to her,” he said.
He’s 45 years old. She’s 40.
What happens to Ron when Sissy is gone? What will this man, who has spent almost every waking moment for five-and-a-half years caring for his wife, what will he do when she’s no longer with him, and he’s left alone to face the enormity of his loss?
I need to believe his faith, along with friends, church and family, can sustain him through what’s to come.
Sissy grew up in Cashiers. Ron is from Picayune, Mississippi. She worked with Consolidated Metco-Bryson City until March 2012, when she had to quit. Ron held a job there, too, as a forklift operator. He stopped working to be with her.
Full-time care was required.
And the years piled up.
He tells me he’s probably going to lose the house, a sad attendant to lack of employment and no steady income. His telling is matter of fact. Ron seems devoid of self pity.
He seeks meaning, maybe finds it, through sharing their story. The couple’s goal is to help other ALS victims and their families.
“This disease destroys everything,” he said.
Sissy’s illness had a deceptively simple start. One leg felt numb. She began to stumble. She started falling down.
When I met her, she was on a ventilator. It has breathed for her since.
The depths of this family’s grief are unfathomable.
ALS felled their bright, vibrant Sissy. Her half brother, Tim Norris, was shot dead Feb. 23, 2016, in his Cashiers home while asleep in his bed. Authorities say the man’s stepson was his substitute father’s killer.
For some reason, until this week, I failed to make the familial connection between Sissy and the murdered man.
Two great tragedies, one small community.
Quintin Ellison is editor of The Sylva Herald.