By Shaler Wright

Every year I make the same wish on my birthday. No matter how many candles there are to blow out, I close my eyes, take a breath and wish — to sleep. Deeply, peacefully, without pain, and without medication. Hamlet’s words ring out like a hopeful refrain in my mind. “To sleep, perchance to dream” is my mantra to self-charge when endurance runs low.

 Doctors don’t know what to make of me. Such a bright, well spoken, friendly woman. But those widespread symptoms? That intermittent pain, migrating aches? And those inconclusive test results!  “She’s so high functioning in daily life, what could possibly be wrong?”

My complaints can’t be neatly gathered under a classic diagnosis, so it’s been repeatedly suggested that my discomforts are a fluke, not really so bad, the result of stress, or dramatic imagination. And then I’m offered that familiar, dismissive smile that lets me know I’ve come to the end of another road. I brace myself for what comes next... “Have you ever considered therapy?”, they ask. I sigh quietly, “Yes I have, but I’m willing to try again.” And snip-snap, just like that I’m referred to a psychiatrist to learn how to become less ill. This is the repetitive cycle of my health story.

 After thirty years and a cornucopia of psychiatric medications that made me feel worse, I learned that the best way to feel better is to stop telling doctors I don’t feel well. It’s not worth the risk, the humiliation or shame. And it’s definitely not worth the side effects of the latest and greatest pill, or the months lost while trying to be patient and give it time to work.

I’ve given decades! So, lack of patience is not my problem. Nor is lack of compliance. My problem is that doctors — through no fault of their own — haven’t been asking the right questions or ordering the right tests. But I didn’t know that at the time, and I hadn’t yet learned to trust my own experience of my body.

 Instead, I learned to believe that I am the problem.

“I’m a wimp. A complainer. Dramatic”

And that didn’t feel good.

So I adapted. I trained my brain to tolerate pain and label it as merely discomfort. I diminished my feelings to the point of dissociating from my body. And I learned to separate my perception of pain from my experience of pain. Distraction became my greatest ally. “If I can’t make the pain go away (and since I’ve been told it isn’t even real), I’ll just ignore it.”

 Hmmph.

 The problem with that technique is that you lose touch with what is real and what is not. And you start to feel like a fake, like you’re the emperor with no clothes, but the only one you’re fooling is yourself. And you begin to doubt yourself, not just in relation to your health, but also your opinions on other matters. You give up your own sense of true north and are left without a personal compass.

 Who can you believe, who can you trust, when you can’t even trust yourself?

 For me, the answer came unexpectedly. Like my own personal Mary Poppins riding in from the east with the winds of change: A new doctor.

 This doctor is different. David London is a psychiatrist (ack!), but also a Functional Medicine MD, trained in Chinese medicine and Buddhist meditation. For two years he quietly listened to my weekly word-dumps without suggesting medication. Instead, he taught me to breathe. And visualize. I learned to visualize comforting space at night, like a cloud around my pain. And it works well enough to let me sleep for a few hours, enough to be highly functional the next day. It’s the best I’ve felt in years, but my Mary Poppins-doctor believes I can feel even better, and he continues to contemplate the puzzle of my health.

 You see, Dr. London has this theory that we all have an inner bucket where bad stuff is stored. And for some people, the bucket is never filled. But for others, for reasons we may not fully understand, their bucket gets filled to the brim and eventually overflows. And this overflowing muck-bucket causes illness.

 I immediately envision a steamed lobster with a belly full of green tamale and tell him it’s disgusting to think of myself as full of toxic waste! He reassures me it’s not because I’ve done something foolish or wrong. It might even be genetic. And there’s a test that can prove it.

 I ask to have genetic testing and the results show that I am indeed one of the lucky few who has trouble clearing certain toxins. I don’t know how to feel about that. I feel both validated and discouraged. Ugh. It sounds like a hopeless predicament and I visualize the possibility of sending myself off in a canoe to disappear over the horizon.

But Poppins-doc has other plans. He encourages me to familiarize myself with the pioneering work of research physician Ritchie Shoemaker. Though sometimes deemed a controversial character, Dr. Shoe’s abundance of published papers and long list of appearances/testimonies before congress and parliaments are enough to convince me to pay attention to his ideas. That and the fact that he’s a really nice guy.

 Ritchie Shoemaker believes that some people have a genetic haplotype that prevents them from clearing toxins. And over time these toxins build up, and our bodies try to fight their effects in various ways, and some of these ways wreak as much havoc as the toxins themselves. All kinds of crazy stuff can happen — headaches, sweats, insomnia, chest pressure, foot cramps, ringing ears, aching hips, swollen ankles, shortness of breath, and most debilitating of all — cognitive dysfunction.

Yep. Brain Drain was the big one for me. When I first met with Dr. Shoemaker, he confirmed that cognitive issues are often the last straw for highly functional patients like me. We cope and adapt and carry on, thinking of our body as an obstacle to overcome. But when illness begins to take our mind, we grapple with the possibility that perhaps we are outmatched. No amount of visualizing will get our brains back. He said, “I’m sure you’ve been told ‘it’s all in your head.’ Well guess what? It is! And we can heal it.”

 Wowza.

I’ve been feeling validated for about two months now. My illness is real and according to the tests ordered by Shoemaker, my results indicate I have Chronic Inflammatory Response Syndrome (CIRS). CIRS is a multi-system, multi-symptom illness, not yet recognized by health insurance providers, but increasingly relevant in today’s world of bio, chemical and environmental toxin overload.

 I’m feeling hope that I may have finally found my tribe. Patients like me. It’s not a tribe many would choose, but for those of us who have had it thrust upon us, we are grateful to be named and recognized. My road to wellness is still long, but at least now I have a plan. And thanks to Poppins-doc and Dr. Shoe, I may just get my birthday wish in a year or two.

———

Shaler McClure Wright is fascinated with the mysteries of creative process and the healing power of creativity. She’s worked as an actor, writer and educator for more than 40 years, and lives in southeastern Connecticut with her son and husband.

www.shalermcclurewright.com

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One Provider’s Journey From Diagnosis Through Stem Cell Transplant

Judith, a P.T. Clinical Specialist in Chronic Pain, had decades of clinical and teaching experience. At age 58, she received a diagnosis of Multiple Myeloma, an incurable blood cancer, with no clear and accepted treatment path, and a limited life expectancy. She unexpectedly began writing and performing as part of a class to help her manage her feelings and experiences. This serious, yet often funny show, demonstrates her transition from provider to patient and what lessons this role reversal may have for others.

Much of her motivation for writing and performing this piece comes from the way the media portrays cancer heroes, cancer miracles, and people that fight for their lives. She presents options other than the fighting model as a response to cancer. In the course of the show, using actual conversations with providers, Judith portrays her interactions with the medical establishment in hopes that there can be a better understanding of the journey and choices faced by a person with a catastrophic diagnosis.

To hear more from Judith you can follow her on Instagram @cancercafeperformance or Facebook.

The National Parks of Emotion: Mapping Our Emotional Experiences of the Pandemic

How has the experience of living through a global pandemic made you feel? How has it affected your life, your work, your relationships, and your state of mind? The National Parks of Emotion is a participatory multidisciplinary art project reflecting on our emotional experiences of the pandemic, led by photographer and community artist Mindy Stricke. 

Join the project, share your story, help people share theirs, and learn how to create abstract photographic landscapes of the National Parks of Emotion you’ve been wandering through this past year. Everyone is welcome, including teens and kids with adult supervision. You don’t need to consider yourself an artist to help build the National Parks of Emotions, you just have to be open and willing to play, take chances, and collaborate. http://www.mindystricke.com

Artist Statement

When I was thirteen years old, my doctor put me in a neck brace and said it would not last long. Eleven years later, I am still navigating extreme oscillations of health while feeling stigmatized and misunderstood. I was diagnosed with Ankylosing Spondylitis (AS) on 11/11/11. Although Ankylosing Spondylitis is a common disease, it remains unseen and unknown by both the public and medical practitioners. My art is how I make my story visible.

My paintings employ layers of text and image to capture the multifaceted identities we have as patients. Patients living with chronic, incurable diseases rarely fit into healthy-sick binaries. With illnesses often invisible and oscillating in symptoms and magnitude, patients find themselves in limbo, betwixt and between sick and healthy. By creating a third box, an “other,” I aim to make this complex identity visible.

In my photography, I show the intersection between the finite and the infinite nature of chronic disease. These body scans are dissected into disconnected body parts: my brain, my spine, my heart, my vertebra. As a patient, I have often felt that my body parts are seen as fragments to be analyzed in separate glass boxes. However, in sum, my boxes represent the connections between my body and mind.

Biography 

Sal Marx is a multimedia artist who works to illuminate human experiences with chronic disease and advocate for patient-centered change. Living with Ankylosing Spondylitis, an invisible, underrepresented disease, she uses her personal story as a visual data point in the context of a much broader healthcare crisis. Marx studied Public Policy, Psychology, and Media Studies at Pomona College. She is based in Brooklyn, NY.

I am an artist based in the San Francisco Bay Area who specializes in the intersection of art and science. I focus on brain scans, particularly MRIs, because I consider them one of the primary symbols of Multiple Sclerosis. Since my diagnosis of MS, I have continually undergone brain scans to track the progression of my disease. Initially the sterile black and white images of the MRIs of my brain were terrifying, and I refused to look at them. I began using my art practice to reinterpret these frightening yet mesmerizing images. I seek to disrupt the unsightliness of these digital images, inviting the viewers to stare directly at the beauty and complexity of the imperfect brain.

My diagnosis has allowed me to integrate neurotechnology into my artwork. Through printmaking, mixed media, and textiles I transform my scan into vibrant landscapes in hopes of challenging how society views illness. I create with the intent of transforming how people view the imperfect body, allowing room for celebration, curiosity, and fascination.

My artwork has been displayed in permanent collection at various institutions, universities, and hospitals throughout the country. My heart remains rooted in the narrative of illness. I am now trying my hand at art and design in the clinical setting.

I have been inspired by the power artwork can have to broaden and deepen the narrative around chronic illness. This is the core of my mission, to create artwork that encourages social engagement and spurs conversations. My vision for several upcoming projects combines patient—centered design strategies, evocative artwork, and powerful narratives. I am currently exploring how art, storytelling and technology can be used to revolutionize the untapped potential of time spent in waiting rooms of clinics.

At some point in our lives, we all become patients and are challenged with accepting illness as a part of being human. Chronic disease is an ongoing natural disaster of the body, where the tsunami is a never-ending undulation of change. This disaster leaves in its wake a real sense of fear, isolation and heightened awareness of the fragility of one's body. Many illnesses that are depicted in the media have a narrative that has a beginning, middle and end—a flowing arc to the story. But most illnesses, especially those that are chronic, lack an arc or even a narrative that makes sense to the outsider. Sometimes it can feel overwhelming, lonely, or diminishing. I create with the intent to transform this experience and use a medium that fosters connections and conversation. In doing so I aim to open up people’s eyes to see the unique perspectives gained through living with disease.

Elizabeth Jameson is an artist and writer who explores what it means to live in an imperfect body as part of the universal human experience.  Before her diagnosis of multiple sclerosis, she served as a public interest lawyer representing incarcerated children; she later represented children living with chronic illnesses and disabilities in their attempts to receive medically necessary care.

As her disease progressed, she began using her MRI’s to create art as a way of reclaiming agency of her own medical data. She transformed the unsettling, clinical images into work that invites people to open up conversations about what it means to have an illness or disability. She now writes personal essays and speaks across the country sharing her experiences living with illness and disability. Her essays have been published by The New York Times, British Medical Journal, WIRED magazine, and MIT’s Leonardo Journal. Her essay, “Losing Touch, Finding Intimacy,” was included in the New York Times book, About Us, released in September 2019 by Norton Publishing.

You can learn more about Elizabeth by visiting her website.

When people look at my poster, their most frequent response is, “Wow! How can I get my own records? I have always wanted to have mine!” I tell them, “Just do it! And be persistent. Even if the contents turn out to be upsetting, I doubt you will ever be sorry.”

This is the story behind how I finally received mine and what I did with them.

I had been wishing to get my hospital records for a very long time. I felt deeply that they belonged to me as they were words written about me during a hellish three-year period in my adolescence. I was certain that they would be filled with outrageous statements, and I desperately wanted to read and respond to them someday.

I was finally released from the last hospital in 1963, and it wasn't until 1978 that I began my search in earnest. During the intervening years, I had been finishing college, marrying, and raising four young children. Although I managed to keep all of those hospital experiences safely compartmentalized away so I could raise my children with warmth and kindness, believe me, the retrieval of my records was never far from the surface.

In early 1978, shortly after meeting my fantastic fellow comrades (Judi Chamberlin, Dan Fisher and David Oaks), I was inspired to start by politely writing to the directors of each of the four different hospitals where I had been locked up: Baldpate Hospital in MA, The Menninger Clinic in KS, Massachusetts Mental Health Center in MA, and Westborough State Hospital in MA. Weeks went by, and I heard nothing. I wrote again. I waited. Again, I got no response. I even considered flying to Topeka, Kansas, to storm that psychiatric barricade and demand my records in person.

Since I was then a single parent with four young children and dwindling finances, I calmed myself and talked it all over with my trusted and dear therapist, Lee. He had saved my life back in 1963 when, by chance, I first met him the night before I was sent to Westborough. He was a young resident and the only person during those three years who had looked me in the eye and smiled and was genuinely kind. He gave me hope. He told me there was nothing the matter with me that had not been caused by the abuses in the hospitals: combined insulin/ECT without anesthesia, seclusion, restraints, molestation, masses of Thorazine, etc.

After meeting with Lee from time to time over the years, in 1978, after my failed letter-writing campaign, we planned a new record-seeking strategy. He wrote to all four hospital directors. It was difficult for me to give the power over to him, but he seemed to be my last, best hope. In 1975, he had become the Commissioner of Mental Health in MA so he clearly had the power, which I was sadly lacking, and he generously used it to help me. Because of his status and powerful stationery, he heard back from everyone except Baldpate. Some of them were only a few pages of summaries, which was annoying, but when he received them he gave them to me.

Finally, during the spring of 1978, since Baldpate had ignored him, Lee made an appointment for us to drive out there.  He told them he wanted us to read the records together, and, since he had been the commissioner, I am sure they felt forced to let us come. I had been talking for months about wanting to steal my records so, on the drive out, I showed Lee that I had brought a briefcase and explained that I had every intention of stealing the pages. I wasn't sure how I would manage it, but I knew I could figure it out once there.

I still remember the day as if it were yesterday. It was a bright blue, sunny day, the trees and flowers were in full bloom, and I was feeling full of hope and confidence. When we arrived at this desolate location in the country an hour outside of Boston, it was a time-travel experience for me. I had not been there since 1961, and the big red "farmhouse" still remained, looming over the grounds. We were ushered into a small office, far from the desolate cinder-block unit where I had been subjected to the combined insulin/ECT. There were two chairs and a little table between us where the thick folder with my records sat—my huge and seemingly glowing hidden treasure! We were at first left alone together to read them, and we decided that I should start reading and then pass each page to Lee. Soon, however, every few minutes an official would nervously interrupt us by opening the door and asking if we wanted more coffee. The records were filled with atrocious, labeling and demeaning words about me, even more disgusting than I had ever anticipated. And, with growing intensity, I wanted to steal every single page from that house of horrors and report the atrocities all over the world.

Finally, after more than two hours of reading, Lee and I had a conversation about how hard they were making it for me to actually commit my theft. He said he wanted to go to the bathroom and told me to feel completely free to do whatever I wished with the papers while he was out of the room. What an advocate he was! But, at that moment I was overcome by his genuine generosity and kindness and fully aware that he might get into serious trouble if I were to steal the entire record. I simply didn't feel I could put him at risk, so when he returned from the bathroom I explained that I had slipped every other page into my briefcase. I paid special attention to picking the most egregious ones, making sure to leave enough bulk so they would not notice, and they didn’t.  We drove back to Boston. I was elated, and Lee was the good sport and true advocate that he had been for so long.

I spent many hours and weeks and months reading the pages over and over, trying to make sense of every notation, every diagnosis. Finally, I bought a box, decorated it with flowered paper, arranged the pages neatly inside, and tied it up with a pale blue satin ribbon.  I kept it on the top shelf of my bedroom closet, where it stayed for years—until October 11, 1991!

That was the date that Anita Hill was called to testify before the Senate Judiciary Committee in reference to the appointment of Clarence Thomas to the Supreme Court. She claimed he had made unwelcome sexually provocative comments to her when they worked together at the Department of Education and the EEOC.  I believed her! Anita was treated dismissively and poorly by the senators, and her treatment put me into high action. I went to my closet, took down my hospital records and proceeded to go through every single page with a fine-tooth comb. The next day, I took the pages and copied them all several times. I then cut out the pertinent, disgusting and demeaning comments and assembled them all on a huge poster board, which I had laid out on my bed.  I designed it using the typed comments, photos from my childhood, and several small sections from op-ed stories I had written which had been published in newspapers.  It took several days of moving the pieces around until I felt completely satisfied. I then shopped around and found a great radical union press, which was willing to print 1,000 copies, way back before digital. The folks at Red Sun Press in Jamaica Plain, MA, were wonderful! I felt respected, they took my poster seriously, and I was thrilled!

I then began showing, selling and giving it away at conferences.  A dear and close fellow comrade bought the first twenty copies in a true gesture of solidarity and generosity.  It was finally registered with the U.S. Copyright Office on April 25, 2007.  I mailed one to The Museum of Modern Art in New York City as someone had once told me that they keep all art which is given to them. I sent a letter of explanation, asking them to consider having a show of art by people who had been locked up in mental institutions, and they acknowledged receiving it.  A framed copy hangs in the history exhibit at SAMHSA.  I gave one to my internal medicine doctor who just recently told me that it hangs on the back of her office door. She is now a dean at Harvard Medical School so perhaps it is having a positive influence on future doctors there. Two years ago, I had three large fabric, plastic-laminated copies made for using at marches and demonstrations. One of them now hangs in the office of Digital Eyes Film.

In the end, this poster has given me a great deal of satisfaction. I feel it is my personal megaphone from the top of the Empire State Building, shouting out to the world: THIS IS WHAT HAPPENED TO ME and THIS MUST STOP!!!

Dorothy Dundas was institutionalized for three years as an adolescent in the 1960s and was labeled a “schizophrenic” and forced to undergo 40 combined insulin coma/electroshock “treatments.” She experienced and witnessed many atrocities. She believes that luck, determination, her own anger and one compassionate advocate were her best friends on the road to her ultimate survival and freedom. Through a number of op-ed pieces in The Boston Globe, Miami Herald and Detroit Free Press, she has voiced her opposition to abusive psychiatric practices. This poster, Behind Locked Doors, which she created from her hospital records, has been  used in training programs. Dorothy lives in the Boston area where she has raised four wonderful children. She has recently retired from The Crystal Lake Express - her own safe, friendly and reliable car service in which she was the sole driver for 30 years. Dorothy is also a blogger on Mad in America: Finding Resilience and Hope in the Face of Despair.

Sick, not silent: A conversation about cancer through art

Sculptor

Dennis@DennisSvoronos.com

DennisSvoronos.com

In September of 2009—at 26 years of age—I was diagnosed with cancer, after experiencing the first of many seizures to come. Of all the trials I could imagine that lay ahead, I never thought most of them would be exercises in recollection.

Patient name? Dennis Svoronos (thankfully I can always get this one)

Date of birth? 3/8/83 (a palindrome, helps to keep it easy)

Occupation? Artist (maybe not my parents first choice)

Approximate date of last surgery? 11/09 (Who forgets their first brain surgery)

Existing medical conditions? Anaplastic Astrocytoma (a cancerous brain tumor)

Repeat daily, for years.

As time progressed; I remember those waiting rooms, questions and ID tags much more than the operating theatre and injections; trauma is kind like that.

However, they made me feel intrinsically linked to my disease. What was I, without these suffixes of sickness to identify with? Somehow, all my other unique and admirable qualities were set-aside for the identifier of ‘cancer patient’. It’s easy to resign to the belief that those forms and wristbands define your life, mere statistics, data—you and your cancer. Just as painless, is to ignore the process completely, pretending your exams and operations are the bad dreams of another person, your ‘real life’ goes on unaffected.

Either way, it seems you’re not to talk openly about cancer, and it is difficult for most; patients, family and doctors alike. My initial sense was, it would be easier for me—and more comfortable for others—to keep off the topic. Sickness is a surprisingly taboo subject in a very liberal culture.

The artist in me, however, couldn’t stop questioning why we hide from the discussion. Over the course of my treatment and the years to follow, the entirety of my work became a continuous, very uncomfortable, conversation about my disease with anyone that would listen.

In doing so, I freed myself from the fear and shame that I felt initially upon my diagnosis. It allowed me to speak honestly to an audience on an issue I was passionate about, to relate to others on a level beyond the initial stigma of sickness. I became a proud patient. My work wasn’t about the ‘battle’, ‘fight’ or being a ‘survivor’; the words of conflict I was trying to avoid. The art became focused on the subtle, sincere and even sarcastic aspects of the life-changing experience I was going through. I wasn’t interested in discussing my struggle with cancer; I wanted to embrace the insight it gave me.

In January of 2014, I exhibited a solo show of this work at the Boston Sculptors Gallery (486 Harrison Ave. Boston). In the month that followed, I was able to engage with patients and the public in ways I was never able to before. My show became a safe space for anyone to talk about this difficult subject. In doing so, stories were shared, wisdom was gained and many tears—of joy and woe—were shed. To all who came, I sought to impart a sense of community and empathy they didn’t enter with. I learned, as a patient I need to speak about my experience with the ‘healthy’ world, regardless of stigma or discrimination. My ultimate healing came through delightful conversations about a horrible problem.

Dennis Svoronos: Biography

Dennis Svoronos’ work exists between art and engineering; it is inspired by the modern world in motion. He uses his sculpture to reflect this environment charged with electricity, spectacle and information. He uses our common language of the 21st century: electronics, robotics and interactive kinetics, to build connections between the viewers and the work. In a society fractured by technology, Dennis Svoronos uses it to bring us together. At current, he is making work in response to his recent diagnosis of brain cancer, seeking to use his art as a platform to question sickness, wellness and recovery.

Dennis Svoronos is a Boston-based sculptor whose work has been shown nationally and internationally. He holds a diploma from the School of the Museum of Fine Arts, Boston, and a Bachelors of Fine Arts from Tufts University. His work has been exhibited at numerous institutions and galleries such as the MFA, Boston; the Norton Museum of Art, Palm Beach, FL; G.A.S.P Brookline, MA; and the Institute of Contemporary Art, Lake Worth, FL. Svoronos has also been the recipient of numerous awards and public work commissions. Currently, he is living and working in South Boston.

Quilt for Emalia Brown, 25.5" wide x 25" high

Machine quilted and hand stitched with organza overlays and beading

By Gillan Wang:

This quilt was made for Emalia Brown, a high school friend from Maui, where we both grew up, after she was diagnosed with stage IV cancer. The news of Emalia’s illness came as a terrible shock. I created the art quilt to raise money to help defray her escalating medical costs and to work through my own sadness and demonstrate my compassion. She died while the quilt was in process, and It is now being donated in her honor to benefit her preschool aged son, in the Kahalakea Guard Educational Fund. The format of the piece is based on a traditional Hawaiian quilt, but differs in that it tells the story of Emalia’s journey, and our shared connections to Hawaii. 

Traditional Hawaiian quilts typically feature a solid geometric plant-based pattern, appliquéd onto a high-contrast solid fabric.  The geometric pattern that I created is based on the silhouette of my friend from a high school year book photo.  The reference is specific, yet her identity is intentionally ambiguous.  (Emalia’s trademark is a flower behind her ear, which is discernible in the silhouette). I used sheer fabric for the silhouette/geometric shape, atop many colorful fabrics that collectively evoke a sense of water, marine life, flora and fauna – all of which we both love. The sheer fabric allows the imagery below to read through, thereby allowing for multiple readings, and suggesting an elusive state of existence. The words grace, love, peace and eternal are embroidered on and around the geometric form, in English and in Hawaiian.

While I was driven by sorrow to create this quilt, I aimed to express a more upbeat message of love, peace and acceptance.

 The creation of this artwork helped me to come to terms with a very upsetting loss.  Initially I was overwhelmed by my sadness, but eventually this project helped me to reflect on the positive attributes of my friend, which we will forever celebrate.  It also allowed me to feel empowered by taking action to help my friend's family in a tangible way, as opposed to feeling helpless about an unfair situation.

Artist Statement:

 My work is primarily mixed-media, with a recent focus on art quilts. Most of my work is inspired by life’s poignant experiences, such as newborn children, parenting and loss. I am especially interested in establishing a narrative in my work, which invariably informs the aesthetic of a piece. I enjoy creating and considering multiple interpretations, and I take pleasure in exploring concepts and ideas using a variety of materials in unexpected ways. Whimsy, bold color schemes, text and found materials often characterize my work.

I grew up on Maui, Hawaii, which heightened my aesthetic sensibilities and appreciation of color and the natural environment. I have a deep love of diverse materials and for working with my hands. I have a BA from Bard College and a Master’s degree in Architecture from Syracuse University, which expanded my capacity to think spatially, and introduced me to many concepts that I now explore in my artwork, such as layering and transparency.

Art by Gillan

Art quilts, collage & painting

Website: ArtbyGillan.com

Email: ArtbyGillan@gmail.com

I’m a photographer and multidisciplinary artist whose work centers around the idea that sharing stories and making art about potentially isolating experiences can help make those experiences less lonely. I map experiences that many of us share, but don’t always talk about.

I’m currently working on an evolving art project about bereavement called Grief Landscapes, in which I’m documenting the wide variety of ways that people respond to loss. First, I’m inviting people to answer a series of questions about how they grieved after someone’s death. I'm then photographing, in extreme close-up, something that evokes the memory of the person who died, transforming it into an abstract landscape inspired by the person’s grief story.

Grief is often described as a journey, but it’s an intensely individual and often isolating one: rarely do people speak openly about the range of ways of grieving, and there seem to be many misconceptions about the grief process. I’m using the project to examine a number of questions about grief and bereavement: What does it look like? How do people navigate it differently? How does grief change us? Grief Landscapes documents grief not as a prescribed set of steps or timelines but as a place where there are no right answers, just an exploration of new territory.

You can live anywhere in the world to participate in Grief Landscapes, and I’m looking for contributors of all ages and backgrounds, with different relationships to the deceased, and different lengths of time since the loss. To view the project so far and submit your story, go to grieflandscapes.com.

Grief Landscapes is supported by a grant from the Ontario Arts Council.

Mindy Stricke is a multidisciplinary artist creating photographs, interactive installations, conversations and collaborations. Her work has been awarded grants from the Toronto Arts Council, the Ontario Arts Council and the Canada Council for the Arts, exhibited throughout North America, and has appeared in international publications including The New York Times, Time Magazine, Newsweek, and the Smithsonian Institute Photography Initiative’s book and online exhibit, Click! Photography Changes Everything. Originally from New York, she now lives in Toronto with her husband and two children.

My name is Nancy Marks. I have been a Boston-based printmaker and painter for more than twenty-five years. In addition to solo exhibitions, my work has been displayed in galleries, restaurants, and corporate settings. I am also a public health advocate and art teacher who is committed to helping others use art to engage in personal healing and community dialogue.

In 2014, I created The Intimacy of Memory, a body of mixed media paintings based on grief, love and remembrance. The work examined why people chose particular objects or keepsakes after someone close to them died. I was interested in the ways in which an object represents the person who died and the shared relationship with the survivor. How do objects celebrate a life? How do objects prompt memory and how does this memory change over time?

This body of work seeded itself fifteen years ago when the biological mother of my adopted daughter, Taylor, died of AIDS. Taylor was six at the time. As I cleaned out her mother’s apartment, I had to decide what to keep. Which items would hold memories of her mother and offer Taylor comfort both in the moment and throughout her life? As I selected a few dishes, her mother’s favorite shirt, a locket, a mirror, I knew it wasn’t just what I kept but also what I didn’t keep that would play a role in Taylor’s recollections.

As part of this exploration, I interviewed participants and meditated on what I had heard. When I began to paint, the layers of color seemed to mirror the layers of their recollections: feelings of loss, love and longing. While many details faded into the background, what I felt most acutely was the sense of connection that stretched from the present to the past. I began to see how relationships and roles become fixed in time and space at the moment of death. How we forever remain mother/father/grandfather, husband/partner, sister/daughter/granddaughter.

As I exhibited this work throughout Massachusetts, I started to feel that I wanted to more closely connect my art life with the power of personal narrative. Since this initial body of work, I have begun to host Intimacy of Memory workshops.

The Intimacy of Memory workshops are designed to allow participants to make art based on the objects they kept after a meaningful loss in their life. It approaches the complexities of grief and love using art as a central connector. Because so many don’t have language for loss, art can play a pivotal role in communicating emotion and promoting healing.

Whether the loss is fresh or long past, this workshop gives artistic space and voice to the grief and love you may have been nursing privately. While the subject is heavy for many, there is often laughter and joy as people share memories.

But the work doesn’t stop there. After a workshop, participants are encouraged to hang their art in public space. The goal of the public exhibition is to promote a community conversation about death, grief and love, three subjects that are often privatized in the broader culture. I know how deeply painful loss can be, but we make the healing process that much harder by not giving our losses adequate  "time.” After all, grief is really just remembering how much we love and miss those we have lost.

In Evelyn Berde’s words, “I have always felt that art has the ability to lift us out of one place and take us to another.”

Evelyn is an artist, a teacher, a healer, and a patient herself. Born with congenital scoliosis in 1950, she spent many years in and out of Massachusetts General Hospital (MGH), confined to her bed for months at a time. Her art is informed by her experience living with a “deformity”, as it was referred to in those times, as well as by her childhood growing up in the old “West End” of Boston, a low-income but culturally rich neighborhood close to MGH and the Charles River which was razed in the late 1950s, displacing many residents, and replaced by residential high rises which still stand today.

Evelyn’s childhood was marked by sadness—alcoholism in her family, the loss of her nine year old brother when she was six, not to mention her own medical condition—but it was also full of beauty, love and color. Her artwork portrays this complexity and texture.

Today, she is a wife, mother to two grown children, an art teacher and therapist as well as an extraordinary storyteller. She weaves her life stories into her art with skill and grace, and she reminds us all that we have the power within us to transform our experiences. “It’s all in you”, she says. “It’s hard to do, and it takes energy, but if you can focus on something that will bring you joy, even in the midst of tremendous sorrow and pain, it can shift everything.” 

You can listen to Evelyn talk about more of her paintings, and view the original publication of this piece on WBUR’s Commonhealth Blog here.