Orem • Mark Sargeant knows the exact date his old life stopped. Oct. 17, 2016. What he doesn’t know is when this new one will end — except that it will be sooner, much sooner, than he had ever expected.
That fall, the vigorous former soldier noticed his left arm had grown a tad weaker but, with typical optimism, he thought the remedy was a few more chin-ups. Later, as he took the microphone to address his large clan at a family reunion outside Elko, Nev., the then-63-year-old extrovert’s hand started shaking.
Not unduly concerned, Mark visited his doctor back in Utah, who, after examining him, recommended a neurologist. When Mark looked up that specialist, he was stunned into silence: The man’s expertise was ALS, amyotrophic lateral sclerosis, better known as “Lou Gehrig’s disease.”
Yes, Mark’s aha moment came courtesy of Google.
ALS is a progressive neurodegenerative disease, robbing patients of muscle control one by one until a person is mostly paralyzed.
Legs, arms, fingers, toes and neck eventually stiffen and become immobilized. Voice and throat muscles weaken, making swallowing a challenge. Finally, breathing requires more exertion than the diaphragm can handle. A patient might suffocate or choke to death on a piece of bread. Or die by falling.
The process of decline varies — the average survival time ranges from two to five years — but the end is the same: Death.
There is no known cause and no known cure, nor any medicine or physical therapy that has proved universally effective in reversing the inevitable.
“That was it,” recalls Mark, with a shrug of acceptance no more dramatic than if he had just opened an unexpectedly large cellphone bill. “I didn’t feel like weeping.”
His wife, Rosie Sargeant, however, says that moment was “a shock to the heart — emotionally jarring.”
In the past two years with ALS, Mark has faced endless disruptions and challenges, from eating to bathing or washing his hair, to getting out of bed, to holding his head upright, and, recently, to walking.
He has endured it all with unbreakable humor and constant gratitude, drawing family and friends closer, recording his remarkable career and experiences for his posterity, organizing his finances and looking squarely at what lies ahead.
For her part, Rosie has taken on the excruciating role of caretaker, which can be physically exhausting for a petite woman and psychologically demanding for the shy partner in the marriage.
They’ve done a lot of crying, holding, traveling, praying, reading, and relying on the unexpected kindness of neighbors and even strangers.
Their five kids have responded in their own ways — denying, suggesting alternative medicine, making memories, bargaining with God, and seeing a divine purpose.
A son even considered a self-sacrificing offer as a last gift to his adored parents.
As Mark’s muscles begin to shut down, he just keeps on being Mark — wheelchair, neck brace and all — except for the occasional tearful declaration: “I hate this disease.”
Inexplicable and rare
About 20,000 patients across the United States are afflicted with this unusually brutal disease, says Emily Jordison, a coordinator with the ALS Association’s Rocky Mountain Chapter.
The Utah number vacillates up and down slightly — “We lost seven patients last week and three more cases were diagnosed” — but usually hovers at around a hundred.
Many patients are veterans like Mark, who receive assistance and full coverage from Veterans Affairs medical facilities. So they don’t worry much about their finances. Others might be forced to take out loans, get a second mortgage or even lose their homes to pay all the expenses — which on average run to $250,000.
Covered or not, all ALS patients have to respond in some way to the heartbreaking news and body-breaking symptoms.
It can be draining emotionally, psychologically and spiritually, Jordison says, and even depression and suicidal thoughts often creep in, which is why she routinely shares with new patients a pamphlet titled “Reasons to Keep Living.”
Many approaches to the end of life are wrapped up in religious views about mortality and what comes next, she points out, and attitudes are key.
Since ALS “traps people in their own minds,” she observes, “a positive, upbeat mind is probably a better place to be trapped.”
That is why a guy like Mark Sargeant, Jordison says, brings sunshine into any room he enters.
‘It’s a Wonderful Life’
Mark was born in Oregon, the second of 11 children, but destined for global travel and adventure.
His father was a logger who a few years later moved his family to a ranch in British Columbia to help an uncle.
Mark and his siblings enjoyed their “free-range childhood” of the 1960s, roaming like ranch hands over acres and acres, feeding the animals, living in a cabin with no electricity or running water, and attending a one-room school.
At 14, Mark contracted rheumatic fever, which required him to lay flat in bed for a summer. He could hardly walk and had to take penicillin for years afterward.
“It was practice for this,” he muses.
But no inflammation could keep an active, ebullient young man down for long.
The family moved to a small town about 50 miles southeast of Wells, Nev., where the future military man became valedictorian of his high school class. From there, he went to Ricks College (now Brigham Young University-Idaho) in Rexburg. He went on to a two-year mission for The Church of Jesus Christ of Latter-day Saints in Milan, Italy, between 1973 and 1975 (“That was when Richard Nixon resigned and Italians were appalled”) and then returned to BYU, in Provo, where he met and married Rosie.
After graduating from the church-owned school and earning a master of public administration, Mark joined the Army, where he remained for the next two decades.
He was a paratrooper, then in military intelligence, and the couple, with their growing family, lived all over Europe and the U.S. — Arizona, Germany, Georgia, Holland, Kansas and Nebraska.
Like Jimmy Stewart’s character in Frank Capra’s “It’s a Wonderful Life,” Mark’s favorite film, the small-town boy picked up friends everywhere he went.
In 1999, Mark retired as a major and the couple moved to Orem, where he was tapped to help the LDS Church with global security issues. He once again traveled the world, checking church safety from the Caribbean to Africa until 2012.
Even as his arm began to trouble him, Mark did background checks for the FBI.
Then came ALS, with its death sentence.
Is Mark afraid to die?
No, he says matter-of-factly. His rock-solid faith in the Mormon afterlife takes care of that.
Besides, “I jumped out of airplanes," he says, before quickly clarifying, "but I volunteered for that.”
Adds Rosie: “He’s not afraid of anything.”
A shared reality
On a snowy December afternoon, Mark gets a neighbor to accompany him to a monthly ALS support group in Riverton, where he meets his past and his future.
These are the only people who share my “social reality,” he explains. “They are so valuable to me.”
In the past two years, Mark has been to several funerals of fellow sufferers, but that hasn’t deterred him from participating. It is worth it, he believes, for the collective tips offered by the dozen or so attendees.
They sit in a semicircle, half of them in wheelchairs, flanked by relatives and helpers. They chat about electric beds, voice-activated devices, ceiling tracks, how to get life insurance or handicap access to national parks, estate planning and caretaker burnout.
One mentions not wanting his wife to abandon their karaoke nights, even though he no longer can sing. A wife says she has had to give up roller derby because “if I get a concussion or break a leg, there’s no way to take care of either of us.”
Mark adds that he choked on a piece of grapefruit recently and, after saving him, Rosie said, “I don’t want to leave you alone again.”
He wants her to “get out,” Mark moans, but there’s “not a darn thing I can do about it.”
All attendees that day begin their introduction with the date of their — and their loved one’s — diagnosis.
For Larry Ujhely of South Jordan, it was Feb. 4, 2016.
“I had no clue what ALS was,” Larry tells the group, beyond a vague memory of the viral “Ice Bucket challenge,” which raised money and awareness of the ailment.
For years, Larry had been quite the athlete. Months before his diagnosis, he had trained and run a marathon but took an unusually long time to recover from it. He began to have trouble with his balance. Muscle cramping moved to his neck and back. Doctors assured him everything was fine. Until it wasn’t.
A nurse started talking about wills, and Larry asked, “Are you telling me that I’m gonna die? She said yes.”
Since that day, Larry has visited his family in Ireland, toured London and Paris, gone on cruises to Mexico and the Bahamas — and visited every baseball stadium in the United States. (“Wrigley was a letdown, but Fenway was neat.”)
The week before, Larry had fallen down and his wife couldn’t pick him up, he recounts, “so she rolled me onto a blanket and then pulled it down the hall to my bedroom.”
The disease has changed “our entire universe,” says Jenny, his wife. “It sucks when something new comes up.”
Larry didn’t realize how fast ALS could progress.
“I am heading toward death pretty quickly,” he says. “I feel my voice is going.”
Participants nod with understanding.
One caretaker talks about how her dad is angry all the time. He is “so frustrated he can’t fish or that his hands don’t work.”
Larry pipes up: “I was angry for six months.”
Another helper says her ALS patient has headaches, cramping, anxiety and fear. An “ornery bugger.”
“That’s part of the disease,” Larry calls out.
Anyone in the room use cannabis?
Again, Larry pipes up and says he has to get it out of state. “It makes me happy and helps me with the pain.”
The last one to speak is Saratoga Springs resident Debby Brooks, who is there with her daughter.
Debby began to see symptoms in 2011 but went undiagnosed until an MRI two years later. When she emerged from the machine, she “had a vision of my funeral, including four grandchildren [three boys and one girl] who hadn’t been born yet.”
The experience gave her a sense of peace rather than foreboding.
“I’ve had peaks and valleys, and valleys, but this isn’t one of them,” Debby says. “I was more self-absorbed. I have become a better person. I don’t have many fears and I don’t have the energy to feel sad and lonely.”
To her, ALS has “truly felt like a gift.”
In the past, she didn’t meet all life’s challenges, Debby says. But she is “up for this one.”
Each person in the room tells a different story, but the same empathy exists all around.
“Most people fear the unknown,” says Greg Burnett, who still teaches a weekly LDS Institute of Religion class from his wheelchair. “We’re pretty sure we know what’s coming.”
A family reacts
As luck — or fate — would have it, Mark’s dad died five days after the Orem man learned about his own condition.
He and Rosie didn’t want to overwhelm the mourners in Nevada, so they waited to tell the kids until after his father’s funeral.
Jake, the oldest, was quiet and contemplative, knowing it was a serious diagnosis but less aware of what all it entailed.
“The emotions definitely came out over time as I learned more about ALS,” the father of one says from his home in Oregon.
Jake, knowing his dad as a man of goodness and kindness, asked the age-old question of why this would happen to such a person.
“It challenged my beliefs about justice, fairness and much more,” he says, but Mormon teachings confirmed for him that this life is not the end.
“Our souls, which move and animate our bodies, have more to experience beyond this life,” Jake writes in an email. “Whatever and whoever is beyond this life, they are clamoring to enjoy the company of my dear dad a bit sooner than we’d like.”
Second child Tracy Phillips of Augusta, Ga., who has five children, cried for weeks and weeks, but then moved into wanting to help her father overcome ALS by changing his lifestyle. She sent him supplements. He gently declined.
“It was my way of coping,” Tracy says. “It hasn’t changed my faith. I was praying for more peace and acceptance and I finally got to a place where I do not feel sad every time I think about it.”
Layton resident Kristin Ruiz, mother of three, also wrestled with the injustice of seeing someone “who wants to care for everybody become so dependent on others” — and “ be doomed.”
And, like Tracy, she urged her dad to do a “homeopathic cleanse,” which he did.
He thought it was valuable to do, Mark told her, but he didn’t notice any difference.
Kristin then turned to her faith for consolation and explanation. Her dad has ALS, she believes, because “God wanted to help him learn things he can use to help people who have died or haven’t been born yet.”
Mark can be “extremely powerful,” she says, “once he’s able to unleash his love and abilities without being limited by his body here.”
Seeing through this spiritual prism has helped Kristin approach the future “with faith instead of fear, because that’s what he taught me and what he’s doing.”
The fourth child, Ashley Breitenstein, was in utter denial.
“No, you don’t have it,” she said over and over. “No, you don’t.”
It took more than a year for Ashley, who lives in Springville, to accept the fact that her father was going to die. She couldn’t see it, refused to believe it.
Then one day, she went alone to their house and spied carpenters putting in a wheelchair lift on the stairs. The truth of the disease became inescapable.
She slumped onto the couch and wept.
After that, all Ashley wanted was to dance with her father at her wedding last March, and, fortunately, his arms and legs were still strong enough to do so.
As they twirled ever so slowly around the reception hall, he whispered in Ashley’s ear, “I hope I did enough as your father. I could have done better.”
Hurts or mistakes from the past melted into the night. All was forgiven and forgotten.
Hearing the diagnosis, the youngest, John, who came out as gay during his teen years, was inconsolable. He sobbed for hours, as he searched his mind for the biggest symbolic gift he could give his dying dad.
“I know,” John said to himself. “I’ll make serious temple covenants.”
Father and son had some differences due to John’s sexual orientation (the church teaches it is not a sin to be gay but acting on it is). John was still active in his church but had not served a mission or participated in temple rites as an adult.
Mark was deeply touched by the love behind his son’s gesture, but over time John realized that was unrealistic. Both are OK with that.
John, who lives near his parents, continues to offer his help, his support and his music. And in July, the professional pianist will perform at an ALS fundraising concert.
That might be, he says, the best present he can give his parents.
All the children now embrace their father’s remaining years or months — even as they watch the disease ravage his body.
“It’s hard,” John says, “to pace your grieving.”
The upside of the ALS arc is that you have time to say goodbye, Tracy explains. The downside is that you are saying it over and over.
The next step
After the kids and extended family learned of Mark’s condition, he had to explain what was happening to fellow Latter-day Saints and other neighbors.
Spending so much of his career in military intelligence with access to reams of confidential information, Mark became adept at keeping secrets — others’ as well as his own.
But this was bigger, more urgent, and soon would become apparent to onlookers.
So, on the first Sunday of December in 2016, he made his way up to the pulpit in his LDS congregation during the monthly “testimony meeting,” and “came out” as a man with a terminal disease who might soon be in a wheelchair.
“It was,” Mark told John, “like coming out of the closet.”
Then Mark went to work on his new reality with disciplined determination. He signed up for every ALS study available, hoping to find out more about the disease for himself or for others who would come later. He took an experimental drug to slow the inexorable decline, though detected no improvement.
The gregarious-but-confined patient found himself awash in an an endless round of secret Santas. Folks showed up out of nowhere to mow his lawn, shovel his walks, trim his trees, and upgrade his electrical system. One friend taped hours and hours of Mark’s memories, then enlisted others to help transcribe them.
“That’s ministering in action,” he says.
He and Rosie retraced in 2017 the spots they had visited on their honeymoon after they married in the Los Angeles Temple in 1977. They enjoyed Sea World, cruised to Alaska, and gathered for family reunions in Oregon and Utah.
Those traveling days are over, he says. “I can no longer drag a suitcase through airports.”
Now, Mark’s neck is in a brace most of the time. He spends hours in the wheelchair at the dining room table.
“The day is coming,” he says, “when I won’t be able to stand.”
Veterans Affairs paid to reconfigure his split-level house, installed the lift that Ashley observed. A ceiling track with a seat helps him get to the bathroom. An automated bed with side rails keeps him from falling out at night.
A while ago, a man in the support group said he got a home health care nurse to help him stay clean.
“He was telling me how weird it was to have these women come in and wash him and I thought, ‘No way would I expose myself like that,’” Mark says with a self-deprecating laugh. “Now they come in and scrub my ‘shiny heinie’ four times a week, too. Wish it were more.”
His goal is to read through the entire canon of Mormon scriptures, and complete a journal for his kids and nine grandchildren.
He recently got Alexa, Amazon’s voice-activated home assistant, which does tasks for him — opens the door, switches on lights, answers the phone, looks up information on the internet and plays music, like his recent request for the Rolling Stones’ “(I Can’t Get No) Satisfaction.”Mark can still eat mashed up or blended food (“blender chicken sandwich — so appealing”), but has a permanent feeding “button,” which funnels nourishment directly into his belly.
Mostly, his face wears an ever-present grin, but tears sometimes interrupt his sentences, as he looks at his wife, for example, and says, “Man, I love this girl.”
The most beautiful thing, Rosie retorts, is that everybody loves him — and he loves them.
“I have lived 65 great years,” Mark says. “I’m kind of excited to see what the next phase brings.”
Right before the December holidays, a friend called and said, “This could be your last Christmas.”
Nah, a hopeful Mark replied. He expects at least two more.
But these dark days of winter, watching his mobility narrow, his pain multiply and his options shrivel, Mark confesses, even an optimist gets tired.