Steven R. Nickerson: As Rare As Hen's Teeth

By Donald R. Winslow

Steven R. Nickerson’s story is not an easy one to tell.

He’s a photojournalist. A very good one. He’s also a funny guy; one look at him confirms that notion. He’s worked hard and done well; his peers and professional awards testify to that. Over the years he’s seen great joy and great sorrow though his cameras; right now, he’s experiencing some of both in his own life. He has a very rare life-threatening disease that’s stiffening his entire body, turning soft tissue to hard, and making him fall back on a little black humor to get by, referring to himself in third-person with self-anointed nicknames like “Timber,” as in the wood, and “Carcass Boy.”

There is a treatment for the disease that’s hardening him, the rare disorder called Systemic Sclerosis (Scleroderma). But each single treatment is eye-rollingly expensive, somewhere along the lines of what a new mid-sized car would cost. Insurance paid for the first two sessions and then backed out. Scleroderma can’t be cured, only treated, and Nickerson needs 6 to 13 of the treatments if there’s to be any hope.

Portrait of Steve Nickerson by Karen L. McCleanHope is one thing Nickerson has. He seems to have never given up hope. And now he hopes that his fellow photojournalists can lend a hand by donating a signed photographic print or two from their portfolios in order to stock a silent print auction that’s being organized by his friends and coworkers at the Rocky Mountain News. The money raised will help pay for one of the treatments.

News photographers Dennis Schroeder and Ellen Jaskol, and Denver Post photographer Steve Dykes, and Kim Nguyen of the Associated Press, and others have been working behind the scenes to organize a print auction and to spread the word within the photojournalism community in hopes of soliciting a great collection of donated prints.

"Steve is an amazing photographer and an amazing person. We’re all hoping this will give him a chance for better health,” Jaskol says. Denver promoter Al Kraizer, a friend of Nickerson’s and the president of Performance International, is helping too. And so is Denver philanthropist Walter Isenberg, who owns more than 90 hotels including Denver’s historic Oxford Hotel. He’s donated space at the Oxford for the print auction to be on display.

“This disease may well kill me but it is finding a tougher foe than even I understood I could be,” Nickerson, an NPPA member since 1979, wrote to News Photographer. “The medications gave me six months of constant hard-pounding diarrhea, my stomach and esophagus and digestive system muscles failed. I lost 65 pounds and have had a constant battle with nausea, and an inability to eat since my jaws are so tight they sometimes feel like they are wired shut. I am on 14 medications with approximately 25 pills a day. I take physical therapy, acupuncture, and psychiatry often during every week, ever since the diagnosis, while seeking assistance from specialists in pulmonary, gastroenterology, neurology, urology, rheumatology and oncology. I tire easily and move stiffly. I cannot tie my shoes or scratch my back or wash my own feet.”

Nickerson, Landers, and BowmanThe print auction is still very much in the planning stages, Jaskol says, but the “call for prints” has gone out to the photojournalism world now even as the auction’s date is being finalized. The auction will be held on March 23, 2006, from 5:30 p.m. to 9:00 p.m. (Denver time) at the Oxford Hotel at 1659 Wazee Street in Denver, CO, 80202.

Nickerson is 48. He was diagnosed in January 2004. “I have had symptoms, improperly diagnosed, for two years prior. I kept this horrid reality to myself, my wife, my kids, and my parents. I am proudly married with two superlative kids, both in college, and the incredible, irreplaceable honor of being married to an angel, Karen (McClean). She is the magic in my soul and the rock with whom I share my inner fears and dreads, and together we have championed an avenue of accomplishment rather than total denial or giving up. Without Karen, I would be dead.”

“Reaching for high shelves is difficult and until recently even lifting the weight of my cameras was nearly impossible. My lungs are scarred and I keep up a monitoring program annually on my heart, and every 6 months on my lungs. This disease is markedly different in each patient. Some respond to treatment. Some do not."

Last June, Nickerson found that he could no longer do his job at the level he found acceptable for his pictures. “I raise my own bar higher every day. Now, I was falling down under it.” Nickerson has been at the Rocky Mountain News for 10 years. He’s part of the News staff that earned two Pulitzer Prizes, and he’s won a World Press Award, and a Hasselblad Magic Eye Award for a documentary project he shot on “Stinking Creek, Kentucky.”

Fashion shoot for winter coats, by Steve Nickerson“I am a professional photographer. I have been working steadily and relentlessly since the mid-1970’s. It has been an amazing journey," Nickerson wrote. "I have worked at newspapers from Ohio to New York to Kentucky to Detroit to Denver. The magic of ultimate pain and life challenge has forced up the greatly bitter and intensely sweet times I have experienced in these past few years.”

Nickerson says the only reason he's a photojournalist today is because many years ago Howard Chapnick, Black Star's famed founder, challenged him to be "more than just a warm body." And then Chapnick became a friend and supporter, along with Jeanette Chapnick, Howard's wife and Black Star's bookkeeper for several decades. "Jeanette's still one of my best friends today," Nickerson says with fondness.

Systemic Sclerosis (Scleroderma) is a rare, chronic, often progressive, autoimmune disease that translated literally means “hard skin.” The body’s immune system turns on its own tissues, attacking the skin, internal organs, and the walls of blood vessels. It is treatable, but not curable. Survivability is dictated by the degree to which the internal organs are involved. Nickerson says that in his case, the disease has primarily invested itself in his muscles and rendered them “dormant.”

“In addition, I also suffer from Raynaud's Syndrome, which affects the circulation closing down small blood vessels to my extremities, making them numb and useless - especially in cold situations.” He also has Acid Reflux, which has been brought under some control recently but it had been scarring his lungs. He also has myopathy (muscle weakness due to the muscle fiber) and neuropathy (disorders of the nervous system).

“My neurologist labeled my condition as ‘Rare as Hen’s Teeth,'" Nickerson said.

“A physician can work an entire career without ever seeing a case of Scleroderma. The few new treatments are coming from research facilities like Johns Hopkins University and Dr. Frederick Wigley at the Scleroderma Center at Hopkins (in Baltimore, MD).” Nickerson says Wigley has 2,000 patients with the disease and that he only deals in research and patient care for Scleroderma. “It’s his belief that a treatment called I.V.I.G (intravenous immune globulin) in combination with a drug called CellCept (mycophenolate mofetil) is a strong assist to battle the immune system’s attack upon itself.”

And this is the treatment that costs as much as $35,000 per session.

“I.V.I.G. is given once a month, over two or three days, for eight to ten hours per day,” Nickerson says. “The pace of the infusion is based on the body’s response. It’s administered at the Rocky Mountain Cancer Center, so that dealing with any complications is commonplace.” He says the treatment is the result of a pooled blood resource that’s obtained from more than 200 human donor offerings of plasma. It’s spun in a centrifuge and separated from the rest of the blood before it’s administered. “It’s hoped that the new replacement antibodies in the infusion will flood out the rogue antibodies that are presently fighting off the good antibodies."

The print auction will raise money to help pay for a third I.V.I.G. treatment for Nickerson after the first two treatments, which were initially approved by his insurance company, were retroactively denied. “Their justification was that this treatment is ‘experimental’ and research, and not covered,” Nickerson said. “Positive results have been obtained slowly, but encouragingly, including increased range of motion in my shoulders and hips, and skin softening on the surface, which allows some more joint mobility.”

Meatloaf in concert. Photograph by Steve NickersonHe feels that he owes his life to Dr. Wigley, who examined him again at the end of January. “He was impressed with the progress.” Nickerson is still pursuing the treatment and resigned to absorbing the cost. “The print auction is an attempt to defray the expenses for the moment,” he says.

Some of Nickerson’s old buddies have already told him they’re donating prints. He worked with David Turnley when they were both shooting for the Detroit Free Press. Turnley is donating his well-known photograph from the Gulf War of 1991 of a soldier in an evacuation helicopter weeping moments after learning that the soldier in the body bag next to him is a friend who was killed in action. Eugene Richards is donating prints. Rich Clarkson in Denver told Steve that he would help too. And John G. Morris in Paris, one of the original members of Magnum Photos, the former picture editor for The New York Times and Life magazine's correspondent in Paris for coverage of Liberation Day, donated a print of his photograph of a young German soldier.

Nickerson says that Los Angeles-based Associated Press photojournalist Nick Ut has donated a print of his famous photograph "The Terror Of War" that shows Kim Phuc, a little Vietnamese girl who was burned by napalm when her village was attacked by American fighter planes, fleeing the burning village with others, a picture that was awarded the Pulitzer Prize in 1973. Nickerson also said that prints for the benefit auction are coming from members of the VII Photo Agency, from James Nachtwey, John Stanmeyer, Alexandra Boulat, and Gary Knight.

After donated prints started arriving from all corners of the world, Nickerson said, with his usual sense of humor, "Dennis made me promise that I won't die before the auction happens."

The audience at the auction will be both professional photographers and the general public. "Prints that appeal to the general public do well," Schroeder said. "The bigger the variety, the better. We want everyone who comes to the auction to find something they like."

“If you’re donating a signed picture we'd prefer a framed photo if you’re in the area, but if you’re sending one from out of town and don’t want to ship a framed picture, please send a matted photograph, in standard sizes, to Dennis Schroeder at the News,” Jaskol said.

To ship a print to Schroeder, please address it to:

Dennis Schroeder

Photography Department

The Rocky Mountain News

100 Gene Amole Way

Denver, CO, USA, 80204

+1.303.892.5382 (telephone)

For more information contact Schroeder at [email protected] or Jaskol at [email protected].

Related sidebar: The Best Pictures Are A Gift, by Jim Sheeler