A Skaneateles family's long goodbye: Confronted by ALS, 'evolving together'
Tom Ruhlman in the late 1980s, with his daughter Jessica while on a visit to Puerto Rico. Tom - whose family speaks of his intensity and passion for life - learned a few years ago that he has a form of amyotrophic lateral sclerosis that is coupled with frontotemporal dementia, which disrupts cognitive thinking.
While the rain pounded on a tent above his head, Tom told the crowd of the work of Eric Lowen, a recording artist who died last March of ALS. Tom, asked by the Upstate chapter of the ALS Association to serve as honorary spokesman for the walk, spoke of how his friends and family emblazoned a line from a song by Lowen and Dan Navarro onto their T-shirts:
“New blessings unfold in ways I could never have known.”
Tom’s fingers were too weak to grip the speech. He spoke into a microphone held by his daughter, Jessica Ruhlman Shoaff, and he read from a sheet of paper held by his wife, Lori. As they do whenever necessary, their hands became his.
ALS, an incurable illness, gradually shuts down life-sustaining muscles. Tom’s form of the disease is coupled with frontotemporal dementia, which strips away cognitive thinking. The condition was upon him before anyone could fully realize it, Lori said. She and their two grown children, Jessica and Daniel, never had what Lori describes as a chance to say goodbye. By the time doctors understood what they faced, Tom, at least as they’d always known him, was gone.
But in the most fundamental ways, Lori said, he is still here — which is why it meant so much to see him speaking in the rain.
The Ruhlmans live in Skaneateles. The couple met in Iowa, when they were in high school. Tom spent his early years living in other countries with his father, an international entrepreneur. In that way, Tom learned to be comfortable alone. He showed no interest in established teenage cliques, a solitary nature Lori found compelling.
“I could salsa,” Tom said in an interview last week, raising his arms and moving his shoulders as Lori laughed. He was a good athlete who spoke fluent Spanish. Before long, Lori fell hard for him.
Her parents, at first, opposed the relationship. Their daughter was two grades behind Tom, and Lori's mom and dad sensed his independence, his force of will. But Tom and Lori shared a quality that cements relationships. She was reflective; he was all about action and problem-solving. What made them different, even as teens, brought them together as a whole.
Forty years later, despite Tom’s illness, that doesn’t change.
“You ask me why I was drawn to him, and I think this it,” Lori said. “He had huge momentum. He could accomplish so much. I used to believe he could do anything, and in all the years he never disappointed me. I used to say he was my Indiana Jones. I always believed – and I really mean this – that if we were on an airplane and it started to go down, he would have found a way to save us.”
She remembers a time, in their 40s, when they were idling in traffic on a visit to Barcelona and a stranger started banging on the car window. In that instant, the man’s accomplice rushed the far side of the car, grabbed Lori’s backpack from the back seat and sprinted away. The backpack held everything, including their camera, clothes and money.
Tom leaped from the car and took off in pursuit. He was closing in until a burst of traffic came between them and allowed the men to escape. While the thieves kept Lori’s wallet, they dropped the backpack as they fled. The chase saved many of Tom and Lori’s possessions.
“It was like a scene out of a movie,” said Lori, thinking back.
Her husband brought that passion into all phases of life. He was tireless at work, ascending into a vice-president’s job at Welch Allyn before embarking on a business of his own. As for his children, Jessica and Daniel, he raised them in the same way.
“He was a great dad, totally an equal partner,” Lori said. Tom was never afraid to change a diaper. He loved being with the kids. During Daniel’s high school years, Lori remembers how Tom would roust the boy at 5:30 a.m. for weekday pickup soccer games with other fathers and sons. “They’d kick our butts,” Tom says now, speaking of how the young men outran the dads. Lori remembers arguing that it was too much: Daniel was a teen. For God’s sake, let him sleep.
Today, she is thankful her son had that time with his father.
In the mid-2000s, the illness began revealing itself in vaguely troubling ways. Maybe they’d be at dinner, and Tom would abruptly serve himself a wildly unnecessary helping of food. Maybe they’d be on a walk, and Tom would tell a joke — and then tell it again and again. Lori grew more troubled, although Tom often seemed to be fine.
By that time, he was running his own company. Lori, a communications officer with the Skaneateles schools, said the Tom she’d always known would have immersed himself in making the business flourish. Instead, he began calling Lori at work, asking in an anxious way when she’d be coming home. His paperwork languished. One night, they went to dinner with a couple they knew well. Afterward, Lori made a casual reference about one of those friends, whose name is Chuck.
“Chuck?” asked Tom, then in his early 50s. He couldn’t remember his friend. He couldn’t remember the ride home.
In that instant, Lori stepped from one world into another. She accompanied Tom as he went through a series of medical tests. The loss of memory, doctors said, was due to a seizure disorder. They weren’t definitively sure of the larger condition until a day in 2008 when Tom attempted to clip his nails, and his fingers were too weak to use a clipper.
He had ALS and frontotemporal dementia, a coupling of illnesses without a cure.
This week, Tom and Lori sat at a table in their home. On first glimpse, at 57, Tom appeared to be well. His legs remain strong. He can walk up and down stairs. While Lori helps him to button his shirt or to put on his shoes, the major physical impact has been in his hands and in the muscle wall of his chest — a complication that will make it increasingly difficult to breathe.
“You’re happy,” Lori said gently, meeting her husband’s eyes. “You’re always jovial. I’ve never once heard you say, ‘Why me?’ Not once, ever since you got this, have you complained.”
Tom smiled. For a few seconds, the room was silent. When he spoke, the topic had nothing to do with her words.
Later that day, in a telephone interview, Lori recalled how she saw an elderly couple holding hands. The scene unleashed a torrent of sorrow. She and Tom, she knew, will never have that moment. Their children will not watch them grow old together.
Lori caught her breath and fought the grief until she was back in control. She speaks of their life together as “the long goodbye,” but she also tries to face each day this way:
Tom, as a husband and father, was always fiercely present. Aspects of that intensity live on in their children, and despite all that’s lost, Tom himself is still here. “We’ve evolved together from the time that we were teens, and even now we’re evolving together,” she said. “Nobody is the same as they once were.”
She does her best to stay away from yesterday, or from tomorrow. What Lori has is the Tom who awaits her each afternoon, so overjoyed when she comes home that he greets her with a bow. It is the same man she accompanied to the Inner Harbor, where he read a speech that spoke of blessings, even in a hard rain.
Sean Kirst is a columnist with The Post-Standard
