A rare brain disease, Mount Everest and a Tampa man’s struggle to grieve

TAMPA — Grief took him here, 18,000 feet up the side of the highest place on Earth.

Tampa attorney Nick Horner’s ascent of Mount Everest stopped on a rocky plateau. He took out a small urn from his backpack and looked skyward. A deep sob racked his body.

“Michael D. Horner, July 22, 1957,” he said to a fellow climber recording the moment on a cellphone.

The second date came harder. “Feb. 8, 2023.”

The Khumbu Glacier is scaled by climbers on the Nepal approach to Mount Everest’s summit. Its deadly icefall and deep crevasseshave claimed 47 lives.

Here, where a cold, sodden mist had reduced visibility to 100 feet and biting winds carried his words away, Horner hoped to find peace with the loss of his mentor, best friend, dad.

“I love you so much, Dad … rest in peace.” Horner said, letting the wind scatter the ashes over the eternal snow.

His father was the closest friend in Horner’s life. As recently as December they rode motorbikes along the Ozello Trail, a Crystal River route famed for its twisty roads.

But in little more than two months,his father was gone,rapidly succumbing to a neurological disease that confounded doctors and prompted the U.S. Centers for Disease Control and Prevention to alert Florida health officials.

Losing his father undid Nick Horner. He lived on bourbon and chocolate. Hair and beard grew unchecked as his bereavement leave stretched from weeks to months. At 35,healing, even grieving, seemed out of reach.

His mom and sister were struggling too. It was beyond him to help. He needed to get away, to get off the grid. So he fled to Nepal for two months, smuggling some of his father’s ashes through customs.

“Grief is a very scary thing — for the first time in your life you feel it’s out of your control,” he said. “I always felt I could find a way to beat it, fix it, overcome it. But I couldn’t make this thing go away.”

Losing hope

Mike Horner, 65, was about to eat dinner aloneat the kitchen counter of his Carrollwood home the evening of Dec. 14 when he passed out.

He regained consciousness in the middle of the night, still in the countertop chair but unable to move and reach his cellphone.

Nick Horner, meanwhile, was in his weekend home in Crystal River under quarantine with COVID-19. His mom, Joy Horner, was visiting his sister, Carly Chak, a Ph.D. candidate at University of California, Santa Barbara.

A neighbor found his dad about 3 p.m. the day after he passed out, and an ambulance took him to St. Joseph’s Hospital. Doctors said he had a simultaneous stroke of the spinal cord and brain.

After five days in intensive care, he was moved to a regular ward. He was still there on Christmas Day. The family spent the holidayin his hospital room with a tree and a dinner of freeze-dried pork.

On Dec. 26, he was transferred to a rehabilitation hospital to beginphysical therapy.

A former land-use planner and development consultant, Mike Horner seemed to be making progress. But on New Year’s Day, he began uttering sentences that made no sense.

He was readmitted to St. Joseph’s a few days later. Specialists said he had suffered four more brain strokes in just five days. The head of the neurology department told Horner his father’s condition was something he hadn’t seen.

The family soughtthe best treatment possible. They reached out to UF Health Shands Hospital in Gainesville, which has a neurological intensive care unit. Their transfer request was denied. Undeterred, they hired a private ambulance and brought Mike Horner to the Gainesville hospital’s emergency room.

After a fraught standoff, the hospital agreed to admit him and transferred him to the neurological ward.

Shands specialists in neurology, cancer, infectious diseases and other fields tried to figure out what was wrong. His blood work was sent to the Mayo Clinic for analysis. The family fielded strange questions from doctors, such as ”Had he ever ridden a zebra or eaten wild boar?”

Hiscondition kept deteriorating. After two weeks, Nick Horner noticed that doctors seemed to be just trying any treatment, hoping something would work.

“That’s when I knew even Shands wasn’t going to be able to help him,” he said. “That’s for me when I lost hope.”

Doctors suggested a brain biopsy, which would mean putting his fatheron a feeding tube.

“Do you want to keep fighting?” Horner askedhis dad, who responded by making a fist and said “Fight.” It was the last word his son heard him say.

The biopsy was inconclusive. Doctors said they didn’t know what was causing the strokes but that the white matter in his brain was losing oxygen and had aged decades in just five weeks. They didn’t know why. After a hard conversation, his family moved him to hospice care.

His father lasted only five more days. The evening of Feb. 8, the family was with him in the hospice. Nick strummed songs on an acoustic guitar his father had taught him to play, such as “Can’t Find My Way Home” by Blind Faith.

Wife, son and daughter were holding his hands when Mike Horner’s breathing stopped.

The hospital wanted to conduct a post-mortem investigation as doctors had been unable to diagnose a disease. His family agreed and donated his brain and spine to the McKnight Brain Institute at the University of Florida. They also paid UF Autopsy Services to autopsy the body.

Horner was on his way home to Tampa two days afterhis dad died when he was told the autopsy had been canceled and his dad’s body was to be immediately cremated as his death was now a suspected case of Creutzfeldt-Jakob disease. A rare and typically fatal neurodegenerative condition, it is considered a prion disease characterized by abnormal folding of brain proteins. While not highly contagious, those with the disease are told not to give blood or donate organs, and to inform doctors of their condition ahead of any surgery.

The next day, Florida Department of Health officials called Horner saying they learned of his dad’s illness through the National Prion Disease Surveillance Center. They didn’t know his dad had already died and immediately ordered additional samples be sent from the Brain Institute.

Six months on, the death is still something of a medical mystery. Doctors at the Brain Institute have now ruled out the disease and believe the death may have been caused by a disorder of the white matter in the central nervous system.

They told Horner and his sister that they should consider getting their DNA tested to look for gene mutations that could explain their father’s death.

“Some things cannot be fixed; they can only be carried.”

Mike Horner never traveled outside the United States, but Everest was one of his passions.

He and his son would go to the IMAX theater at the Museum of Science and Industry for screenings of Everest, a 1998 documentary filmed in IMAX. He watched documentaries and pored over books about the world’s highest mountain.

It was something Hornerkept coming back to as he, his mom and sister struggled in the weeks after his father’s death.

Sister Carly Chak withdrew from her doctorate program for the semester. Off work since mid-January, Horner was ready to quit his job atShumaker, Loop &Kendrick until Jaime Austrich, vice chairperson of the law firm’s management committee, told him to take whatever time he needed.

His mom, Joy Horner, meanwhile, was dealing with the detection of cancer cells in her breast tissue.

They all seemed lost in their own world of hurt. Groceries were ordered online to avoid people. Horner stopped replying to text messages.

He felt incapable of crying in front of his mom and sister. In sessions with his therapist, Beth Kuehling, anger and doubt about the meaning of his life surfaced, she said.

“When people lose someone, our brains want to feel a sense of control,” Kuehling said in an interview with the Tampa Bay Times. “Grief and loss is an extreme moment of feeling out of control.”

A cousin mentioned to Horner that he had hiked the Annapurna Circuit in Nepal, a trek that takes in river valleys, Tibetan villages and half a dozen mountains.

“I thought it was what I needed to get my mind right and at the same time it just clicked,” he said. “Dad had never been out of the country. I was like, ‘S—t, I’m going to take him there.’”

He reached out to the Nepal embassy hoping to get permission to bring some of his father’s remains but didn’t hear back by his March 22 flight to Kathmandu. Worried that customs might confiscate the ashes, he took two small urns, placing one in checked luggage and one in carry-on.

For six weeks, he just walked. No work emails. No phone calls. Just his thoughts and the mountains.

Some days he dodged storms and rain, or stopped to cry. He prayed at shrines. When the sun came out, it felt like it was for him.

In the evenings, he staredat the stars and read from “It’s OK That You’re Not OK,” a book on grief written by Megan Devine after her partner drowned.

Recommended by a friend who had lost his father, the book’s theme is that grief isn’t something to be fixed but more like a gardento be tended.

“For the first time in my life, I’m finding out maybe there’s a problem I can’t solve,” he said.

But he found comfort in the cold of Everest. There’s no higher place on Earth, he thought. He could not be closer to his dad.

“I found myself saying goodbye to him,” he said. “That is where I thinkhe would want his final resting place to be.”

Five months on, grief still comes. Horner calls them emotional waves. Now they seem shorter, sometimes just half an hour.

“You wake up some days and just don’t go to work. You open your computer and you just can’t think,” he said.

In those moments, he shuts his door.