About

Posts by :

Opinion | ‘My Body Is a Clock’: The Private Life of Chronic Care

Opinion | ‘My Body Is a Clock’: The Private Life of Chronic Care

Chronic illness is well hidden from society.

Before I had a name for what ailed my body, I thought of myself as dehydrated and out of shape. I believed that the physical discomfort I’d experienced for years — numbness, pain, tingling and pins-and-needles sensations throughout my body — must be traceable to a cause of my own making. At that time, I looked at chronic illness as an outsider. It was a thing that happened to others, not to me.

That changed on Christmas Eve 2014, when a neurologist at NewYork-Presbyterian Hospital read my M.R.I. and confirmed that I had relapsing-remitting multiple sclerosis. This form of the disease, as the name implies, is characterized by unexpected flare-ups and periods of remission.

I was 26. I realized right then that my dream of being an artist, and the unconventional lifestyle I expected along with it, was over before it began. Four months after my diagnosis, I received my first infusion of high-dose intravenous steroids. In the fall of 2015, under the care of a neurologist, I began a monthly intravenous treatment of medication that blocks immune cells from entering the brain and spinal cord. I travel 65 miles to a site in the Hudson Valley for the infusion therapy.

The author standing near a sunlit window between two chairs. An intravenous tube connected to her hand leads to a monitor a few feet away.

Treatment has been successful, and I have remained in a state of remission while taking it as recommended — every 28 days, indefinitely. But even today, nine years into managing the illness, I struggle with the chronic nature of my condition. I am always aware that if lose my access to regular treatment, I’ll be at risk of severe disability.

Though I don’t like to admit it, every choice I make is determined by my need to maintain uninterrupted access to medical care. This has made my illness the truest navigational force of my life. Rather than orient myself to the cycle of the moon, I orient myself to the cycle of infusion. And it has become a system in my creative work. My body is a clock.

Every 28 days, I point the camera toward myself to document my illness and care. I have used my time as a patient in the infusion suite, a place where I sometimes feel powerless, to reclaim my autonomy as an artist and photographer.

In the infusion suite, both my body and my mind become containers for information. My body holds the new intelligence of the medical drip. As the fluid flows through my body and into my bloodstream, my mind is usually inundated with information from the staff.

Since my diagnosis I’ve thought often of my aunt, who has lived with progressive multiple sclerosis for years. Without health insurance, she did not have access to advanced imaging, diagnostic testing, medication or lifestyle guidance until her disease was very advanced. Instead, she found ways to self-medicate. Now in her early 60s, she is immobile, hardly able to speak and unable to navigate the social programs for which she is eligible.

Whether or not we’re aware of it, we all live in fragile bodies that require tremendous care and attention to function. Each and every one of us exists on a spectrum of illness, often dipping in and out of it. And yet, we also exist in a culture where it is taboo to talk about being sick, and the taboo can allow shame to fester among those who are chronically ill.

Still, I choose not to dwell on the scarier moments of managing the disease — the psychological burden and angst caused by my symptoms as well as the precarity and inhumanity of health care access and costs in the United States. The sophisticated treatments that exist today make this the best time in history to live with multiple sclerosis — if you can get access to care. The politics of this cannot be avoided. To be sick is political.

Maintaining all the pieces to continue to receive care in the current system is exhausting and stressful to navigate. Patient education and advocacy have been critical to my health care experience.

I came of age and of illness after the Obama-era Affordable Care Act established protections for people with pre-existing and chronic conditions. Yet even with this framework and my participation in private insurance, now supplemented by my employer, the recurring thought of losing my coverage and being denied my medication causes me much distress.

We are not prepared for problems that cannot be solved, and living with that reality is part of being chronically ill. There is no practical end. How do we break the silence to begin to discuss pain, loss, a broken health insurance economy, overworked nurses and the precarity of care?

With the coming 2024 presidential election, there will surely be renewed calls to repeal and replace Obamacare. The threat and fear of losing access to care will loom for millions. Even with the recent and ongoing events of the Covid pandemic, an adequate and sustainable system remains out of reach. Hundreds of thousands of Americans have already lost and are still losing access to care as Medicaid pandemic protections expire.

Political responses to this crisis of care matter. But so do personal and artistic ones. What if chronic illness, long concealed and misrepresented by popular culture, was made more visible? What if it was more often a subject for art?

Sara J. Winston is an artist and the photography program coordinator at Bard College.

The Times is committed to publishing a diversity of letters to the editor. We’d like to hear what you think about this or any of our articles. Here are some tips. And here’s our email: letters@nytimes.com.

Follow The New York Times Opinion section on Facebook, Twitter (@NYTopinion) and Instagram.

Makah Museum marks anniversary on Saturday

Makah Museum marks anniversary on Saturday

NEAH BAY — The Makah Museum will mark its 44th anniversary with pop-up shops showcasing the talents of Makah artists on Saturday.

The celebration, set from 10 a.m. to 4 p.m. at the museum, 1880 Bayview Ave. in Neah Bay, also will feature traditional storytelling by Steven Jimmicum at 1 p.m. in the indoor longhouse.

More than 20 vendors will offer a diverse range of handmade items, including carvings, basketry, jewelry, drums, beaded items and baked goods.

The artists and vendors will retain 100 percent of their earnings from their pop-up shops, which will be on the grounds of the museum.

“As part of the festivities, attendees will have the chance to engage in the rich cultural heritage of the Makah tribe through traditional storytelling,” said Janine Ledford, executive director.

“The Makah Museum’s 44th Anniversary Celebration is a testament to its enduring commitment to preserving and promoting the vibrant Makah culture,” she said in a press release.

“By providing a platform for local artists, this event not only showcases their unique talents but also celebrates the resilience and creativity of the Makah community.”

Featured at the event will be well-known Makah artist Spencer McCarty.

An enrolled member of the Makah Tribe, Spencer’s Indian name is Nuu·kʷis·me·ya, which means “he who has feasting songs wherever he is.”

He describes his artwork style as being Southern West Coast, Makah and contemporary. Although Spencer carves a variety of artwork, he specializes in rattles, paddles, face masks, totem poles and model canoes.

Other artwork that Spencer makes includes cedar bark rope, headdresses, bowls, spindle whorls, whistles, clubs, talking staffs, steam-bent boxes, canoes, shell rattles, harpoons, spears, knives, bailers, halibut hooks and carving tools.

McCarty’s work has been exhibited in “Neah Bay Now” at the Legacy Gallery in Seattle; National Native Community House Gallery in New York; “Northwest Native Expressions” at the Native Art Gallery in Port Townsend; and “Annual Mask Show” at the Snow Goose Gallery in Seattle.

He also has been featured in the Journal-America- Sunday Issue 1989, Peninsula Cultural Arts in the Spring of 1992. He was a member of the performing arts “American Indian Dance Theater” and was featured in the Los Angeles Times.

Spencer’s artwork has been commissioned by the Makah Cultural and Research Center in Neah Bay, the Burke Museum in Seattle and Washington State Historical Society in Tacoma. He is featured in a book titled, “Northwest Native and Native Style Art.”

“My commercial artwork shows examples of possibilities within the laws of the cultural heritage of the Makah people,” Spencer has said.

“I am especially grateful to our Elders who allow us to make our living through their arts and history. By the Elders allowing us sell our artwork commercially, we are able to practice and hone our skills to make artwork for our chiefs to be used in dances. I am also thankful to my God for the gifts given to me.”

Spencer has worked with other Northwest Coast Indian Artists that include Frank Smith, Henry (Hank) Thomas, Otis Baxter, Aaron Parker, Art Thompson, Greg Colfax and George David. Spencer is presently working with Theron Parker and John Goodwin.

The museum interprets and houses artifacts that are between 300 and 500 years old recovered from the Ozette archaeological site, as well as other historic and replica pieces and photographs related to the Makah Tribe on display year-round.

It also offers educational programs that highlight the history, traditions and contributions of the Makah people.

For more information, see makah.com.

Show highlights nature photography, sculptures

Show highlights nature photography, sculptures

PORT TOWNSEND — Kerry Tremain flouts the rules of nature photography, says fellow artist and friend Ray Troll. Famous for his own rule-flouting art, Troll spoke about the photographs on view in “Outside In,” a major exhibition at Northwind Art’s Jeanette Best Gallery.

Troll singled out Tremain’s photo of a black oystercatcher, in which the viewer locks onto a single eye of the ebony-black creature.

“He got the spirit of that bird,” Troll said.

The show also features ethereal landscapes by Brian Goodman, sculptures and jewelry by Sara Mall Johani and bronze works by her late husband Tom Jay.

“‘Outside In’ is a sensory experience,” said Diane Urbani, communications manager for Northwind Art. When it opens today, it will present 23 of Tremain’s photographs from his book “Aves,” including images of white pelicans, trumpeter swans and one angelic bluebird.

Goodman’s photographs from his project, “Solace of Space,” render forests and seashores in ways that invite contemplation.

“My intent is to blur the lines between what we refer to as ‘photography’ and what we refer to as ‘art,’” he said.

“These are images of such
tranquillity,” Urbani said, “a refuge for the mind and heart.”

“Outside In” interweaves the photography and sculptures with a soundtrack of birdsong. On occasion, Tremain and Goodman went out together with their cameras, and the results are shown together in the gallery.

Jay and Johani have 11 works in the show, which is the first gallery exhibition of Jay’s sculptures since his death in 2019. He is remembered as a kind of shaman — a poet, author and sculptor of ravens, fish and other Northwest totem creatures.

Jay and Johani are well-known in the region as both artists and originators of Wild Olympic Salmon, the pioneering wildlife restoration group.

“Like Tremain and Goodman’s photographs,” Urbani said, “the sculptures evoke the spirit of an animal, and the feeling of a place.”

Said Johani in an invitation to friends: “Tom and I are pleased and honored to be invited to exhibit our sculptures along with two formidable photographers.

“Of course, Tom can’t participate in person,” she continued. “But his sculptures stand in for him admirably. It’s almost as if he were here to see his work on display, they are so very Tom.”

On Saturday, “Outside In” will be part of Port Townsend’s Art Walk, when the local galleries stay open until 8 p.m. Tremain has invited another friend — Yup’ik artist, singer and dancer Chuna McIntyre of Eek, Alaska — to sing a welcome song at Jeanette Best Gallery that evening.

“Outside In” will continue through Aug. 27; the regular hours are noon to 5 p.m. Thursdays through Mondays at Jeanette Best Gallery, 701 Water St.

Both Tremain and Goodman moved to Port Townsend several years ago from California: Tremain from the Bay Area and Goodman from Los Angeles. Tremain was an editor of Mother Jones and California magazines; Goodman was a commercial and documentary photographer. The men have begun new lives here, practicing their art and learning firsthand about the nature of the Pacific Northwest.

Last year, Tremain and Goodman worked together on the “Still Here” project, of which Northwind Art was a sponsor. They built a relationship with the Chemakum people, a tribe that had been wrongly listed as extinct. They made large-scale portraits that were hung at Chimacum High School and published in a book, “Still Here: Portraits of the Chemakum,” about the tribe’s living members.

Tremain hopes the exhibit will help bring the “outside” in. As poet Mary Oliver wrote in her famous poem, “Wild Geese,” the artists want visitors to experience how “the world offers itself to your imagination … announcing your place in the family of things.”

NCC dead bird sculpture ruffles feathers

NCC dead bird sculpture ruffles feathers
The NCC’s newly-installed sculpture of a dead crow fashioned from old tires is ruffling feathers on social media, but passersby viewing the artwork in person resonate with its deeper message.

Center for Railroad Photography & Art Launches New Digital Archive

Center for Railroad Photography & Art Launches New Digital Archive

By Railfan & Railroad Staff

The Center for Railroad Photography & Art launched its new collections management system this week, which allows visitors to explore its collection of railroad images that now numbers in the hundreds of thousands. 

The Odyssey online portal was selected in June 2022 by CRP&A staff members to house digitized images from its collections. Over the past year, the archives team has worked closely with the platform’s developers to customize and implement the software. Users can explore all of the Center’s images that are currently available in its Flickr galleries, but now collected in a single location — as well as new offerings from John Gruber, Stan Kistler, David Mainey, and Jim Shaughnessy, with more to come from Richard Steinheimer and many others.

“The Center’s archives and digitization efforts have grown tremendously over the past few years, and Odyssey’s large storage capacity limit offers opportunities for even further collection development,” said Adrienne Evans, director of archives and collections. “We recently finished migrating all of our digital collections from Flickr to Odyssey and we’re excited to introduce everybody to the new portal. Being a new system, we’ll constantly make improvements as we expand the galleries to include more images from our growing collections.”

“After a lengthy search and implementation process, we’re excited to begin sharing more of our collections through Odyssey,” said Scott Lothes, president and executive director. “Our collections team has digitized tens of thousands of photographs in the past couple of years alone. We have so much to share with you.”

The collection can be found here

Evelyn Hofer, Photographers’ Gallery review — elegant and incisive photos of cities and citizens

Evelyn Hofer, Photographers’ Gallery review — elegant and incisive photos of cities and citizens

The German photographer Evelyn Hofer was an expert of the group photo. A retrospective of her work at the Photographers’ Gallery in London shows her remarkable ability to capture the energy of multiple subjects in a thoughtful, patiently composed image. In “Orphans, Dublin, 1966”, two brothers sit with pained looks beside their smiling caretaker. In “The Mid-Rhondda Workmen’s Band perform an open-air concert, 1964”, seated members of a brass band blow their horns in front of an industrial town, with a bandleader towering over them. Another photographer might over-egg the scene. But from the right distance, Hofer is able to find a balance between the parts and the whole.

The Photographers’ Gallery show also includes some clever pairings: portraits of two young Dublin mods hang next to a photo of a pair of seminarians on bicycles. “Place des Vosges” (1967), one of Hofer’s most captivating and impressionistic photos on display, is a Parisian park scene and a complex group shot of children rushing between rows of pollarded trees. In another, a trio of gravediggers stand erect with their shovels leaning against the ground, invoking the interplay between those (living) upright and those lying in the graves.

Hofer, who died in 2009, still hasn’t received the same level of recognition as her (mainly male) photographer contemporaries. Seeing her Washington, DC photos on display, it’s difficult to understand why she’s been passed over. There’s a talent that comes with an outsider’s appraisal of American political life. With Hofer, we get a leather-booted motorcycle cop sitting astride his machine under a cherry tree; a civil servant poised on anonymous linoleum flooring of a grand government building — the texture and aesthetics of democracy’s machinations brought to life.

A woman in thick-rimmed oval spectacles looks straight ahead with an intense gaze
Evelyn Hofer, ‘Self-Portrait, New York, 1960s’

Hofer was well travelled. She grew up in Germany, trained as a photographer in Switzerland and made her early pictures in Madrid. She photographed artists’ studios and made exquisite architectural work while living in New York and her work took a move towards poignant, luxuriantly gloomy still life while she lived out her final years in Mexico City. The carefully arranged bowls of lemons and assemblages of paint cans from Hofer’s late period remarkably echo her group portraiture.

While Hofer’s photographs were overwhelmingly shot outside the studio, it would be a misnomer to call this work street photography. Their compositions are all exquisitely lined up, with very little left to chance. Yet Hofer spent much of her career shooting discerning and often elegant photos of cities and the people living in them. That includes, notably, collaborations with critic Mary McCarthy, as part of a book on Florence, and with VS Pritchett on book projects about London, New York and Dublin.

Four women in crisp, smart clothing of the 1960s sit or stand under a tree in a suburban setting
Hofer’s ‘Secretaries in Rawlings Park, Washington, 1965’

Her work is often associated with the legacy of German New Objectivity, a strand of naturalistic art that rejected the Romantic ideals of expressionism in the 1920s. In particular, Hofer’s work bears a strong connection to the photographer August Sander, who was famous for his long-running portrait series People of the 20th Century

But Hofer’s deviation from Sanders’ ethnographic project is just as interesting. For one thing, her photos don’t display the same completist impulse. Although there’s a studied quality to the images that she makes, she doesn’t set out to provide anything like a comprehensive typology. Indeed, there’s an interiority at work, more dramatic yet more serene than many of her documentary peers. “In reality, all we photographers photograph is ourselves in the other, all the time,” goes her often-repeated quote. 

A man wearing military uniform stands close to a woman; both are smiling gently
‘Soldier in Uniform with Girlfriend, New York, 1974’

Even Hofer’s editorial and more commercially-minded work on display has a weighty humanism to it. For Life magazine, Hofer shot a series of newly-weds (Just Married, 1974) with a quiet humour, emphasising slightly awkward, uncertain marital bliss without succumbing to satire or prodding cruelty. In one photo that possesses an incredible chemistry, a man in army uniform stands with his body cocked towards his partner with an indecipherable gaze; she poses with her mouth slightly open, as if about to speak to him. It’s Hofer’s ability to etch out these subtle dynamics between her subjects that make the images so lasting.

To September 24, thephotographersgallery.org.uk