From a Cuke to a Cure
“Everything in my life is different now, but I make it work.”
Arthur Cohen
It took a single autumn day to foreshadow the end of chasing his passion of photography in the unparalleled pace of Manhattan,and to open the door to something much sweeter than ever expected to grow from garlic and vinegar.
In the fall of 2014, Arthur Cohen, class of 1980, was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. An incurable progressive neurodegenerative disease, ALS claims a person’s ability to walk, talk, eat, and eventually breathe, all while leaving their mind unscathed. For many, the disease leaves their cognizant minds imprisoned in a deteriorating body and often becomes fatal within two to five years of diagnosis.
“Everything in my life is different now,” said Cohen. “But I make it work.”
Frozen in their frames are memories from 33 years of his photography career that captured the likes of countless models, the now Senator Al Franken, Chris Farley, David Spade, Janeane Garafalo, Adam Sandler, and many others. Arthur even spent a week behind the scenes of Saturday Night Live for a piece in New York Magazine, in which the daughter of fashion icon Calvin Klein worked as his gopher on the set—a far cry from his former work as The Spartan news editor where he needed a photographer to accompany him to cover stories.
Not one to be star-struck, Arthur notes the proudest moment of his career was shooting a woman recovering from breast cancer surgery. With the help of a hair and make-up artist he said he helped her feel beautiful again, even in the photos taken without wigs.
“She told me that was an important part of her recovery,” Cohen said.
Little did he know his lens would also capture a friendship that would later support him through his illness.
“Closing the studio would have been devastating for him, it was his identity for so long,” said Cohen’s wife Janet. “But now he has this new identity that he’s so excited about.”
Five years before his diagnosis, Arthur began making pickles as a hobby from cucumbers grown in the garden of their family home. Shortly after his diagnosis, he told Janet he thought he would make pickles his “thing” and sell them to fund ALS research.
“So we started having these pickling parties. I think that’s what helped him sort of adjust to this new normal because it gave him something exciting to transition to,” Janet said.
This decision to make and sell pickles to fund ALS research and bring awareness to the disease quickly became known as Pickals, and it is, in every sense of the word, homegrown.
Stemming from garden fresh cucumbers and friends and neighbors gathering in the Cohens’ kitchen, Pickals quickly evolved into a full organization that today makes the recipe every two weeks out of a factory in Wayne, N.J. with an ever-growing group of volunteers.
Although Cohen started Pickals, his physical limitations have led him to create a board for the organization, aptly named The Pickals Brine Trust Board, to handle donations, as well as to delegate responsibilities such as social media, marketing, and distribution to committees within the organization.
“Closing the studio would have been devastating for him, it was his identity for so long, but now he has this new identity that he’s so excited about.”
“I just give them my two cents,” he added “I do sales and still go to the factory.”
According to Cohen, the factory is owned and operated by Bill McEntee, who after losing a friend to ALS decided to donate his labor and raw materials to Pickals. He also said that while many of the volunteers who work with Pickals make up his friends and family, there are many others who donate their time and resources because of their connection to the ALS community.
“I’ve met the most wonderful people on this journey,” said Cohen.
To date, Pickals has raised more than $100,000, but due to overhead fees in insurance labels, legal costs, and food certifications the organization is looking for other ways to generate greater revenue for ALS research. This past spring, Arthur said the group raised over $2,000 by donating Pickals to charities to sell for themselves. The profitable spring gave way to an even greener summer, in which Pickals gave a $10,000 check to Compassionate Care ALS, (CCALS), as well as another $10,000 check to the ALS Therapy Development Institute for ALS patient care services.
Cohen is grateful for the support he receives from his wife, their two children, his caregiver, Ina, family, friends, and their countless volunteers. He is also excited about his daughter’s ambition to bring awareness to the disease through filming a documentary about Pickals.
“To have Pickals be Arthur’s legacy would be so fitting,” said Janet. “Until there’s a cure for ALS we’re going to be making pickles.”
Until then his life is one of constant change. It’s a physical breakdown mirrored by a mental and spiritual resilience. The same hands and eyes that once gave him the power to capture a moment in time, now give Cohen the ability to speak. From his wheelchair, he communicates primarily through touch screens and eye gaze technology. A gift from former NFL safety for the New Orleans Saints and ALS patient, Steve Gleason, the eye gaze tablet registers reflections of light in his eyes to make impressions on the screen. Arthur uses his eyes to type on the tablet keyboard and the computer then speaks what he has written. This includes everything from regular conversation to his creative writings, which he now uses to fill his time. His most recent work, a satirical play called “Killing Trump”, depicts the lives of an ALS patient and his German caregiver during the 2016 U.S. Presidential campaigns.
Looking ahead, Cohen said he plans to complete the one act play and to host a reading of his work. He said his greatest goal, however, is for Pickals to fund enough groundbreaking research that his friends at the ALS Association lose their jobs.
“No matter what life throws your way you can always make a difference,” Arthur said. “The diagnosis wasn’t an end for me. It was a beginning.”