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.

Zachary went through puberty twice, first as a girl, then as a boy, after he started taking hormones. “The second time was a lot better,” he said. “I got excited when my voice cracked, and when I started to smell different,” though he adds that excitedly telling friends that you smell really bad is kind of a conversation killer..

Zachary is transgender. He was born female but he has always known, even before he could articulate it, that he is male. His journey has been challenging, and he suffered from depression for many years as a result. But he is now a confident, happy, inspiring young man

Last month, Zachary, 19, graduated from Methuen high school. He’ll start Wheelock College in the fall, where he has received the four-year, $20,000 annual Passion for Action scholarship for his demonstrated commitment to community service, leadership and scholarship. He plans to become a social worker with the goal of working with LBGT (lesbian, gay, bisexual, and transgender) kids.

Medically, a transgender person can choose to pursue hormonal treatment and/or surgery in order to bring the biological sex closer to the gender identity, though no intervention is a necessity. For female to male trans people, like Zachary, the surgical options include removal of the reproductive organs, “top surgery” (mastectomy), or “bottom surgery” (construction of male genitalia). For now, Zachary has chosen to pursue hormones, removal of his uterus and ovaries and top surgery, but doesn’t feel that he needs to have bottom surgery. He stresses that this is a personal decision, and that no two transgender people are the same.

Sexual orientation among transgender people is equally varied. Zachary identifies as bisexual. He has dated females in the past and currently has a boyfriend who is a female to male trans like himself. Their shared experiences have brought them very close.

I have learned a tremendous amount from Zachary. I now better understand that people are born with a biological sex and a gender identity, and that these don’t always match up. Trying to ignore ones gender identity, or to force it to align with ones biological sex when this doesn’t feel right, is painful and psychologically detrimental. To feel whole, gender identity must be embraced, but when there is incongruity between biological sex and gender identity, as is the case for transgender individuals, society doesn’t make this easy.

Most importantly, Zachary has taught me that we all need to educate ourselves and develop tolerance toward transgender individuals. He is a person with tremendous courage and integrity, but he has been forced to deal with a more difficult set of decisions than most of us, and with societal discrimination.

This week, the Joint Committee on the Judiciary in Massachusetts held a hearing to determine the future of the Equal Access Bill.

This bill would add “gender identity” to the Massachusetts civil rights law for public accommodations. As it stands, this law prohibits discrimination on the basis of “age, race, creed, color, national origin, sexual orientation, sex and marital status” in public accommodations, but does not protect transgender individuals. Put simply, this means that Zachary could be denied service or treated unfairly in a restaurant, an airport, a retail store, a public bathroom, on public transportation and so on. According to a national transgender discrimination survey published this year, up to 50% of transgender individuals in Massachusetts have experienced verbal harassment or mistreatment in public accommodations.

Originally published on WBUR Commonhealth Blog July 12, 2013

Resources:

For general information:

http://www.glaad.org/transgender

http://community.pflag.org/staff/transgender

For parents and families:

http://www.imatyfa.org/resources/parents/

Photo credit: Marilyn Humphries, Greater Boston PFLAG

It was a humid night in June,
One of the hottest days of the year.

You could feel your hair standing up on its end,
As a cold and warm front collided.

It left passers-by wondering if the lightning would ever stop.

It did.

So people believed that the storm was over,
That all was well.

I was too loose.

A group of us were going to Fenway,
First game of the summer,
First beer of the week.

The change in weather felt like a good omen,
We bantered as we walked up to Yawkey,
Taking in the smells of Franks,
The shouts of vendors,
And the sight of RED.

As we moved past security,
And scalpers that hounded,
We made our way to our seats.

Suddenly,
To the right of me,
I heard a sickening sound.

Like the thump of a bird as it hits a window,
Or the crack of a gun as it soars through the air,
Or the split of a head as it meets concrete.

A man lay,
Cane sprawled in front,
Unmoving.

RED blood started pooling,
Pouring out of both ears,
Like my beer pouring out of its tap.

People were screaming,
But I couldn’t hear.

I kept thinking,
He is right next to me,
DO SOMETHING.

I thought back to the CPR training I had taken two summers before,
Was this it?
Is this what I was supposed to do?
Is this the final test?

I got confused and spun in a circle,
Walking around next to him,
Hoping that suddenly I would know his diagnosis,
As the loops straightened out in my head.

Looking,
Gaging,
Watching,
But not acting.

THANK GOD.

Someone else nudged him
Someone else was on a phone,
Someone else said help is on the way.

THANK GOD SOMEONE ELSE IS HERE.

My friends call me over,
Terrified,
But they know they are ok.

They don’t know him,
He’s not their dad,
Uncle,
Or brother,
But I know him.

He was standing right next to ME.

Just that morning,
I was telling someone about my degree.

What do you study?
Medical Humanities.
What does that mean?
EMPATHY.
HELP.
CARE.
LOVE.
SUPPORT.
Oh ok. I get it. We need more people like that.
I AGREE.  We need more people like that.

NOT
Running away,
Waiting for someone else to step in,
A FRAUD.
A PHONY.
A DISGRACE.

As the stretcher wheeled itself,
And four EMTs rushed after it,
I considered chasing after them,
I felt sick.

I’m sorry man!
I didn’t know what to do.
I’m sorry man!
I panicked.
I’m sorry man!
I’ve never seen blood pouring out of a brain.
I’m sorry man!
I haven’t signed up for this.

But I didn’t.

Maybe I’m not EMPATHETIC.
Maybe I’m not destined to:
HELP.
CARE.
LOVE.
SUPPORT.
Maybe we need more people like that.
I AGREE. We need more people like that

Sarah Ramsey is an incoming senior at Boston College with a major in Operations Management and a minor in Medical Humanities.  She is the Managing Editor of the Medical Humanities Journal of Boston College and a trip leader for the Appalachia Volunteers.  Sarah aspires to use her business background to improve and expand health opportunities.

By Annie Brewster

Daniel and I went to the same private school I attended for high school. I was older by a few years and don’t remember him well, but he seemed like a happy enough member of our school community. It wasn't until last year, 30 years after graduating, that I learned about the abuse: In middle school, he was molested by an English teacher. Students, faculty and administrators stood by, most of us oblivious but some aware, all silent and all somehow complicit.

Now 45, Daniel shares his story with strength and compassion, speaking out straightforwardly and unapologetically about this trauma and the effects it had on his health. He has not only recovered, but is also helping other individuals who have experienced similar abuse, or are at risk of it.

Trauma associated with the abuse of a student by a teacher is especially insidious, as the perpetrator is often a respected authority figure, someone the student wants to please, typically held in high regard. For Daniel, it was difficult even to label what was going on as abuse. Instead, unconsciously, he internalized shame. Years of depression and anxiety ensued, and an ongoing journey of recovery. Today, Daniel says that the struggles he has faced, though unwanted, have made him stronger, and ultimately healthier, by encouraging depth of perspective, self-knowledge, resilience and empathy.

Recent reporting by the Boston Globe has highlighted the prevalence of sexual misconduct by staff at New England prep schools, with over 100 private schools identified as potentially involved in such incidents over the past 25 years, and more than 300 alleged victims coming forward.

In most cases, like Daniel’s, school administrators did not intervene to stop the abuse when they should have. Allegations were not taken seriously, and abuse survivors are justifiably angry. But Daniel would say that our school responded admirably, with compassion, respect and action, when he approached administrators regarding his abuse a decade ago -- more than 18 years after it occurred. The school, with Daniel’s help, has become a role model in guiding other schools through this process.

Daniel recently brought a civil suit against his abuser, and is satisfied with its settlement. Recent changes in the law extending the statute of limitations on sexual abuse of minors allowed him to bring the suit, and still more such legal changes are likely in the coming months.

Daniel says that recovery, both from depression and trauma, is non-linear and involves slowly naming and making sense of what has happened.With time, he has learned to integrate the complexity of his situation, to appreciate his vulnerability and his strength. He is a survivor of trauma, and so much more. No one part defines him. In this acceptance, he is whole.

Originally posted on the WBUR CommonHealth Blog on December 28th, 2016

At the age of 17 at an all-male boarding school in Virginia, Jenks developed what would grow into a life-threatening eating disorder. It began with over-exercising, and quickly spiraled into bulimia, stimulant abuse, and drug and alcohol addiction.

Over the following ten years, the eating disorder ruled Jenks’s life and took uncountable things away from him. He hid his disorder for years, ashamed to tell friends and family that he was struggling with what was considered by many to be a “women’s disease.” It did not help that he did not know any males with eating issues to whom he could turn for advice.

Eventually, Jenks opened up to his family about his co-occurring issues with alcohol, drugs, and food. Hospitalizations and treatment programs helped him address his substance addiction first, but in the absence of those behaviors the eating disorder surged. He realized his pattern of trying to fill the void he felt inside with whatever was at hand: drugs, alcohol, relationships, exercise, or food.

Now 31 and in solid recovery, Jenks discusses the mixed feelings he had for years about letting go of his eating disorder: part of him wanted freedom, but another part was unwilling to give up the rituals. When Jenks began his journey towards recovery in earnest, at a treatment center called A New Journey in Santa Monica, California, it was not without stumbles.

From these experiences, Jenks realized his passion for service. He describes how his recovery is based in giving back to others who are themselves recovering from alcohol and drug addiction and eating disorders. One of Jenks’s primary missions is to encourage men to engage in open conversations about their struggles with food, which he believes is the essential first step to healing.

Originally from Rock Hill, South Carolina, Jenks currently resides in Venice, California where he works as a House Manager in a sober living house for men.

In the weeks leading up to the 25th anniversary of the Americans with Disabilities Act (ADA) on July 26, social media was abuzz with disability stories. The National Museum of American History even organized an international Twitter conversation on #DisabilityStories on July 15, 2015. For the remarkably successful daylong event, people from across the globe engaged in conversations about representations of disability in art and popular culture, the lived experience of disability, and historical accounts and artifacts.

For people with disabilities and disability rights advocates, this anniversary occasions both celebration and reflection. Accessible spaces, biomedical technology, and assistive services have made the world a more habitable place for people with disabilities. At Boston College, where I attend school, student have rallied around the cause of disability, fighting for a campus as accessible as it is beautiful. The Disability Awareness Committee of Boston College has made accessibility a critical issue on campus, documenting the ways in which the built environment and institutional policies at Boston College—for instance, steep pathways marked as wheelchair accessible—disempower them.

Disability advocates in Boston marked the anniversary with a celebration in Boston Common.

The ADA has been a remarkable success, but we must not forget the work left to do. William Peace, who attended the event, perhaps sums it up best: “[The ADA] has succeeded legally, but socially it has a long way to go.”

Securing the civil rights of and equal opportunities for these citizens is, bottom line, an issue of representation. People with disabilities are daily disempowered and isolated by institutions and individuals that pass over, erase, or ignore the realities of disability. It happens when a conference is held in an inaccessible building. It happens when a path is marked as accessible but is, in fact, unnavigable. It happens when a vision resources workstation provides no resources, when the sign for the workstation isn’t even in braille.

People with disabilities are often invisible in some parts of everyday life, such as in the workplace. In 2012, only 33.5% of working-age people with disabilities were employed. In the media and popular culture, individuals with disabilities appear less often than able-bodied individuals. When they do appear, their portrayals are often limited.

The unflagging stigma and underrepresentation of disability halts the progress of the ADA. If people with disabilities continue to be forgotten or perceived in problematic ways, then the ADA will fail to achieve its ultimate goals of accessibility and inclusion.

Stories are the answer to this crisis of representation. Which stories get told and how those stories are circulated determine how disability is understood socially and culturally.

We need to move away from disability as burden and the “super-crip” stereotype. While these two overarching narratives seem compassionate or inspiring, they both portray disability as a tragedy, and life with a disability as inferior and unsatisfying.

Disability cannot be reduced to a single narrative of pity, overcoming, or empowerment. Disability, as with all lived experience, is complex, multi-faceted, rich, individual. It resists a single story.

As a society, we should listen more to the stories of individuals with disabilities. To the stories of their everyday life, of their successes and their struggles, the minutiae and the monumental moments. Disability is an innumerable range of stories—told, retold, to be told.

Telling stories of disability is vital to making visible and giving voice to individuals with disabilities. Hearing stories is a way of acknowledging the reality of disability and empowering people with disabilities. By acknowledging similarities, differences, and singularities, we connect ourselves with stories.

So let’s keep sharing #DisabilityStories beyond the 25th anniversary of the ADA. The success of the ADA is about more than ramps, web accessibility, or public services. It’s about making everyday life accessible, inclusive, and fulfilling to people with disabilities. It’s about changing our attitudes and assumptions toward disability once and for all.