The time stamp on Bill Alkofer’s camera marks the moment his life as a photojournalist started to end.
October 19, 2018. 6:53:41 p.m.
Alkofer was covering a high school football game for the Orange County Register. He needed to lift the camera over his head for a Hail Mary shot of cheering fans. But his body wouldn’t obey his brain.
For weeks he had been noticing weakness in his right arm. “I figured it might be some sort of pinched nerve brought on by 40 years of carrying 40 pounds of camera gear,” he said.
But then his bicep started twitching. He referred to “Dr. Google” and learned that fasciculations, or twitching muscles, could be a symptom of neurological disease.
For Alkofer, that disease ultimately would be diagnosed as amyotrophic lateral sclerosis, or ALS. It is always fatal, with a 2-to-5 year life expectancy.
An award-winning photojournalist, Alkofer, 59, has traveled the world covering sports and news. Now his world revolves around his bucket list and his desire is to tell his story, and to demonstrate a good attitude, even in the face of a devastating illness.
“I use my sense of humor for everything in my life, regardless of how tragic it is,” Alkofer said. “It’s all about funny.”
After reading his Google diagnosis, he looked over his insurance plan and decided to visit neurologist David “Clyde” Holstein.
“I picked him because Clyde Frazier is my all-time favorite player. I carried around his rookie basketball card when I was a kid,” Alkofer said. “And Holstein is my all-time favorite dairy cow.”
After muscular strength tests and an electromyogram — which Alkofer describes as an acupuncture prick and a funny bone sensation without the funny — Dr. Holstein determined, “ALS was on the table.”
“The Clyde Frazier rookie card was replaced with a Lou Gehrig baseball card,” Alkofer said.
ALS, a rare neuromuscular disease, is also known as Lou Gehrig’s disease. It ended the New York Yankees’ first baseman’s career in 1939. An estimated 12,000-15,000 people in the United States have ALS, according to the Centers for Disease Control and Prevention.
After his first diagnosis, Alkofer, who grew up on the “flat, cold, and foreboding” plains of North Dakota, drove to the Long Beach apartment he had picked for its exquisite “National Geographic” light. He cried until the sun-drenched walls went gray.
“Light is life,” Alkofer likes to say. He spent his career anticipating people and the sun, always waiting for that peak story-telling moment when the two become perfectly aligned. But on this day in 2019, at the beginning of a year-long diagnostic process, all he saw ahead was darkness.
Alkofer sat at his desk and prayed to his father, Ray Alkofer, who died at 81 in 2011 of another rare neuromuscular disease, multiple system atrophy.
He is convinced that his father’s death was related to toxins he worked with at Marine Corps Air Station El Toro and that his ALS is tied to his father’s illness. However, the Mayo Clinic says on its website, “Some researchers are studying a possible inherited component or involvement of an environmental toxin in the (ALS) disease process, but there’s no substantial evidence to support these theories.”
Dr. Holstein, uncertain that Alkofer had ALS, referred him to UCI Medical Center neurologist Dr. Namita Goyal, who specializes in the disease.
Instead of making an appointment via phone, Alkofer showed up unannounced at her office in Orange wearing his trademark shirt and tie. He learned from his father that people judge you by what you wear, however unfair that seems. He handed the staff his medicare card, a box of peanut brittle, and his driver’s license, which pictures him dressed as an expressive female with overdone lipstick. Everyone looked at it and laughed. “You are now our favorite patient,” he recalled a receptionist saying.
He enjoys testing societal limits, especially at the Department of Motor Vehicles. “I can’t connect with boring,” said Alkofer, who made up fake words like “monosubsantiant,” during his high school valedictorian speech and advised classmates, “If they give you ruled paper write the other way.”
During the appointment, Dr. Goyal wondered if Alkofer was suffering from multifocal motor neuropathy, a rare but curable disease that is sometimes confused with ALS. Alkofer was put on intravenous immunoglobulin therapy. He underwent three sets of treatments over the next year. Four hours a day, four days a week.
He kept his condition secret, telling not even family and friends, and continued working as a freelance photographer for the Diocese of Orange, the Orange County Register, and other local papers. He didn’t want people treating him differently or feeling sorry for him.
He thought maybe the intravenous treatments were helping, but Dr. Goyal gave him the definitive diagnosis on St. Patrick’s Day of 2020. Alkofer has always been fascinated with saints and, coincidentally, exactly four years earlier had written and photographed a story for the Register on Orange County Bishop Kevin Vann, who shares that interest.
“Saints are part of an oral tradition to inspire holiness and give hope,” Vann says in the story.
Name the topic and Alkofer can ascribe a saint, often regaling his friends with long-winded stories.
This time, Alkofer went home, drank a beer, and watched Family Guy in the golden light of his apartment.
‘Pretty good story’
His right hand continued to lose dexterity and his right arm weakened. He lightened his load and started using a monopod to support his camera. When his monopod became hard to screw on and off the camera, he bought a new “expensive” one that worked more smoothly. Photography was his “raison d’etre,” he said, “the reason I was put on this planet,” and he wasn’t going to give it up easily.
He slowly started confiding in others that he is dying. He wanted to have his story documented by the Orange County Register “because I’m a journalist, I feel I’m obliged to tell the story. It sucks that this is happening to me but it’s still a pretty good story.”
Alkofer wanted to participate in a drug trial run by UC Irvine Medical Center and help give long-overdue hope to future ALS patients. But COVID-19 would prevent that from happening as the trials were put on hold.
Ideas that raced around his sometimes manic mind now became bucket list priorities. They included starting a “Semper Fido” dog coat business to raise money for Marine service dogs, and designing and selling T-shirts for the University of North Dakota, the school from which he graduated cum laude with a journalism degree. “I would have graduated summa cum laude but I fell asleep during my french final because I was working all night at the school newspaper.” He hopes money from the shirts will fund native American language education on a reservation in Fort Totten. “I feel a responsibility to help languages survive,” he said.
Interestingly, his 30-year battle with depression seemed to be loosening its hold. “I have no time to focus on it,’ he said.
He decided to live in the spirit of singer/songwriter Warren Zevon who died of cancer in 2003 at age 56. David Letterman’s staff was amazed by Zevon’s sense of humor after he was told he had three months to live.
Letterman asked Zevon what he has learned from his ordeal. “Enjoy every sandwich,” he said.
A year ago, Alkofer started swinging his arm for momentum to reach otherwise unreachable items and fondly remembered Uncle Tony, who was also his high school physics teacher. He recites, “Physical labor equals force times distance. When I meet up with him in heaven, I’ll ask him to change my grade from a D to an A minus.”
Alkofer also developed what he calls “the crawl,” or moving his hand spider-like along a surface so he can get it to another place.
The steep 17 steps leading to his second-story apartment became a hazard. The first time Alkofer fell, “blackhole” thoughts raced through his head. “At that point I realized I wasn’t in control,” he said. “I thought about my dad and I remembered the fear in his eyes. I imagined being in a wheelchair, breathing on a ventilator and not being able to speak.”
His father went through all these degradations, which Alkofer plans to avoid. He wants to end his life before he reaches that point, with the “two most important people in my life” by his side: His daughters.
Early in his diagnosis, Alkofer defied the disease, standing precariously on a ladder to put things where they had always been instead of placing them on lower shelves, and retrieving them with a hockey stick despite the exhausting physical toll.
He successfully held his own for months. When his fingers could no longer tie his shoelaces he got new shoes with velcro straps. When he could no longer put on his contact lenses he got corrective eye surgery. When he could no longer hold a cold beer he drank from a straw. But all these cheats proved no match for the cruelty of shrinking muscles.
“I should say, ‘Give up Bill and go to sweatpants,’ but I want to wear oxford button shirts,” he said. “Every item I give up is a trajectory towards the Pearly Gates.” Alkofer added, “It’s like I’m being mocked by Bill Lumbergh (the passive-aggressive boss from the movie “Office Space”) and reminded that I’m on a time clock. And I know I’m going to lose.”
A living wake
He no longer can work and is on long-term disability. Except for one camera and a few lenses, he gave his gear away to former colleagues during a beach get-together, after which friends raised more than $23,000 in less than three days through a GoFundMe account. He no longer drives and sold his 2013 Volkswagen Jetta for $100 to a neighbor who helped him when he fell down the stairs.
Alkofer’s mood recently started to become agitated and combative.
Well-meaning friends and family came over and picked bath towels off the floor, but he struggled to reach them. If someone opened a window and forgot to close it, Alkofer stayed cold throughout the night. When someone tried to hand him something, he sarcastically reminded them, “I still have ALS.”
“They don’t understand because I don’t look sick. I’m not in a wheelchair,” he said with annoyance.
Alkofer has surrendered one last thing: his independent California lifestyle. He has agreed to move back to Minnesota with his older sister, Julie Lang. She arrived recently to help him pack up his small apartment and go back to the state where he used to live before moving west.
Pandemic permitting, Alkofer is planning a large living wake in a Czech social hall in Minnesota “with free pizza and Grain Belt Premium beer.” But he adds, “I don’t want a pity party unless a food fight follows.”
This past Thursday was Alkofer’s last full day in Long Beach. He gathered with friends at a restaurant across the street from his home. When he returned to his building he fell at the foot of the stairs. Two friends had to help him up to his apartment.
On Friday, Alkofer sat outside in a black desk chair at the bottom of the stairs, a soft wind rustling his hair. With tears in his eyes, as his sister packed the car with last-minute items, he finally acknowledged what his doctor told him: He should be in a wheelchair.
“I enjoyed my last Southern California sandwich,” he said, a riff off Warren Zevon’s advice, before Alkofer and his sister drove away.
Source: Orange County Register