As usual, Bill Alkofer was behind his camera to capture the moment.
It was in this moment, though, that the photojournalist became the subject.
“I know the exact second when my disease manifested itself,” Alkofer says. “It was at 6:53 p.m. and 41 seconds on October 19th, 2018. I know the time because I was taking a picture at a high school football game.
“I tried to lift the camera over my head — and I couldn’t do it. I couldn’t lift up the camera.”
This moment eventually led to a diagnosis: A variation of ALS — amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease).
There is currently no cure for the progressive condition that steals a person’s ability to move, talk, swallow and — eventually — to breathe. It typically comes with a life expectancy of two to five years.
“As soon as the neurologist said, ‘ALS is on the table,’ it hit me like a ton of bricks,” Alkofer said. “I sat in the parking lot for an hour. … That night, I dreamed of my dad.”
His dad passed away of a similar condition. Could there be a connection?
After the diagnosis, Alkofer reacted like many us do when the news is bad and we need support: He came home.
‘IT’S A MINNESOTA THING’
Alkofer, who most recently worked for the Orange County Register in California, says that he “hails from the hinterlands of North Dakota,” but he also called St. Paul home for many years, some of them as a photographer for the St. Paul Pioneer Press. And it is here — St. Paul — where he has come home.
“This is where my support system is,” he says.
The 59-year-old has moved into an assisted-living facility in Highland Park. But, in addition to the caregivers and his family and friends, his support system of almost 20 people also includes people carrying cameras: his fellow photojournalists. They go back — way back. Back when pictures were processed not on computers, but in darkrooms.
“My friends here are still very loyal, with huge hearts,” he says. “It’s a Minnesota thing.”
Maybe it’s a “Bill thing,” too: Alkofer’s community of friends, family and colleagues both past and present — from California to Minnesota — came together for him after his diagnosis, raising more than $25,000 to help get him back to Minnesota, and to pay for a hotel while he waited for a spot to open up in assisted living.
And now his friends are preparing another GoFundMe — to raise money for the living wake Alkofer wants to host, as well as for his funeral.
‘THIS IS THE MOST IMPORTANT PHOTO OF YOUR LIFE’
At the Pioneer Press, Alkofer captured life in Minnesota — and sometimes in North Dakota, too — for almost a decade.
Perhaps his most iconic image is from the Grand Forks flood of 1997.
After the Red River burst through the dikes and flooded the border towns of Grand Forks, N.D., and East Grand Forks, Minn., on April 19, 1997, a fire began burning in downtown Grand Forks.
Later that morning, Alkofer waded into the floodwaters to photograph two firefighters as they stood hip deep in the water, trying to hook up a hose to a fire hydrant — an unsuccessful effort to extinguish the blaze that eventually consumed 11 buildings.
“I wish I could go back,” he says, “and whisper to 1997 Bill, ‘This is the most important photo of your life.’ ”
‘TIME IS OF THE ESSENCE’
In between seeing patients on a recent morning, Dr. Namita Goyal remembers one of her former patients: Bill Alkofer.
“He is very tenacious,” she recalls. “He is very charming.”
He was a good advocate for himself, she recalls, wanting all other possibilities to be ruled out before they reached what was the ultimate diagnosis of ALS.
Goyal is used to seeing the cruelties of this progressive neurodegenerative disease that was first identified in 1869; she is a neurologist at the ALS & Neuromuscular Center at the University of California, Irvine Medical Center in Orange County.
“Every one of my patients have stories that are just as heartbreaking as Bill’s,” she says.
Still in his 50s, Alkofer should have had years left to work as a journalist. But Goyal says she also has patients who are only in their 20s; she has patients who are mothers of young children.
It might take more time, she says — but she does believe we will unlock the solution to ALS.
“I do believe that,” she says.
For Alkofer, it’s urgent.
“We know the clock is ticking,” she says. “Time is of the essence for Bill.”
‘WHY ME?’
Whatever you do, don’t call Alkofer’s diagnosis a journey.
“I hate it when doctors call your illness a journey,” Alkofer says. “Dante’s walk through Hell — that’s the kind of journey I’m on.”
He’s philosophical about it, though.
“Why me?” he asks. “Why did I get sick?”
He knows why.
“It’s because I’m a journalist,” he says. “I can tell the story about what is happening to me. And maybe offer some hope to someone else. Because there are tiny glimmers of hope, tiny advancements with drug trials.
“But it’s also about my dad.”
Before Alkofer was born, his father, Ray Alkofer, served in the military.
“From 1951 to 1953, he was in the Marine Corps, stationed at the El Toro air base in California,” Alkofer says. “And one of his jobs there was to degrease the planes with this chemical, trichloroethylene (TCE).”
Could that have led to the family’s health problems?
“My dad had this disease called multiple system atrophy, which is a rare neurological disease that only one in 100,000 people get,” Alkofer says. “And now I have a rare neurological disease.
“I watched my dad die from this disease,” Alkofer says. “We’ve had genetic testing and we can’t say 100 percent why it happened. But after watching my mom spend two years fighting to get V.A. benefits for my dad, I 100 percent knew that I wanted to do a story about how veterans like my dad fought to get benefits.”
In April, Alkofer’s story — “Military legacy: A veteran’s son shares the health stories of former El Toro service members” — ran in the Los Angeles Times, a companion piece to Greg Mellen’s article, “We didn’t know’: Veterans of El Toro say their service had toxic consequences.”
In his article, Alkofer writes about how, after his father died in 2011, he began tracking down other veterans who suffered ailments they connected to their time as Marines.
“I thought I would have more time to collect their stories,” Alkofer wrote in the Times.
Alkofer did have enough time to document several of their stories, which the L.A. Times shared, along with the photos that Alkofer took while he could still hold a camera.
It was his last published story.
‘I LOVE THAT SOUND’
In a South Minneapolis back yard earlier this summer, Alkofer stood at the center of a studio a friend had created with backdrops and lights for a portrait session.
“Gotta get a good obituary mug for the Walsh County Press,” Alkofer joked, referring to his hometown paper in North Dakota.
For his fellow photographers, it’s strange to see Alkofer on the other side of the camera.
“He can no longer be who he is,” said one shooter.
By this time, Alkofer had lost the use of his arms.
But he’s learned that there’s more than one way to take a photo.
“I’m still taking pictures in my head,” he says.
As the photographers around him lifted their cameras and aimed, Alkofer listened to the whir of the shutters and smiled.
“I love that sound,” he says.
Photos can be memories, too, memories that ALS can’t take away. Like most of us, Alkofer has some favorite family photographs that live on his fridge.
“My happy place is a photograph of my daughter, Emily, posing on a cliff in Shadow Falls Park and she’s holding yellow flowers,” he says. “It’s scratched and bent in the corner. When I look at it, I stay for awhile in the flowers and then I notice the corner and I think, ‘I should get that fixed someday.’
“The other photo is of my older daughter, Katie, holding a strobe. It has an ink stain on it, but it wouldn’t be the same picture without it. So that’s my happy place, too.”
BALL GAMES, STORM DRAINS AND VEGETABLES
On a recent trip to the second floor of the Minnesota History Center in St. Paul, Alkofer was hunched over a light table, looking at negatives, searching for images he took of the St. Paul Saints through the years.
There were thousands of his negatives depicting daily life in St. Paul, 18 boxes in all, some of them rolled in on a dolly under the supervision of Jennifer Huebscher, curator of photography and moving images.
The envelope titles are captions to Alkofer’s working life: “tornado #1”; “waterfowl opener”; “storm drains, Lakeville”; “funny looking vegetables.” There’s also “state hockey,” “farm crisis” and “Internet banking (1999).”
Alkofer’s negatives were part of a recent Pioneer Press donation to the Minnesota Historical Society (newspapers routinely donate their older archives to museums or historical societies for preservation and access).
For the curator, it was like watching the history of St. Paul come alive on this summer afternoon.
“I don’t usually get to talk to the photographers,” Huebscher says. “Usually, when we get donations of photos, they are several generations removed.”
These images will not gather dust.
“Newspaper negatives are some of our most used collections,” she says. “They’re always getting pulled — it’s great.”
Frame by frame, moment by moment, Alkofer’s images are part of our history.
‘ENJOY EVERY SANDWICH’
Back at the table in his apartment, Alkofer spent a recent afternoon sifting through decades of the images on his computer.
If life is marked by moments, Alkofer is trying to appreciate everyday ones.
“Do you know Warren Zevon?” he asks. “He was a musician, dying of lung cancer. He was on the David Letterman show, and Dave asked him, ‘Now that you know you’re dying, what have you learned from that?’ And he said, ‘Enjoy every sandwich.’
“I mean, that’s been my philosophy all my life,” Alkofer says. “But even more since I’ve been sick, I stop and I enjoy more sandwiches.”
It’s perhaps his most important photography advice for all of us.
“If you’re out with your kid or someone and see a beautiful sunset, don’t take a picture with your cellphone,” he says. “Put your phone down, look at the sunset, close your eyes — and ‘enjoy that sandwich.’ ”
