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Sick, not silent
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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.

A Life I Love

There are days when dealing with this chronic illness just becomes too much and I simply want to curl up in a corner and wait for it to end.

I’m tired of all the doctor appointments, being sent from specialist to specialist, trying to explain over and over again the many symptoms I’ve been experiencing every day for the last 5 years.

I’m tired of pain, of weakness, exhaustion, difficulty breathing, night sweats, lack of sleep, trouble swallowing, muscle spasms, twitches and involuntary kicks and flinches, and all the other symptoms that have joined the party.

I’m tired of trying medication after medication, hoping to find one with minimal side effects or allergic reactions.

I’m tired of dealing with the insurance company and explaining to doctors why I can’t work. I’m tired of feeling like I need to convince everyone that there is something very physically wrong in my body when to the outside world I look normal.

I’m tired of doctors giving one diagnosis, then another, doing their best but not able to provide any words of comfort. First, they say I likely have ALS, then Amyloidosis, then Isaac’s Syndrome, then some other horrible incurable disease but no one can be sure yet, so I’m told to wait to see how it progresses. I’ve waited and I’ve waited, it’s been 5 years, can someone just tell me what the heck is going on?

I’m tired and weary. These are the thoughts that rise to the surface of my mind from time to time, and I’m starting to feel more comfortable with that now. I’m learning to give myself space and permission to feel what I feel when I feel it.

For me, this means…

  • Allowing myself to feel sad on days when it’s really windy and I long to be windsurfing

  • Acknowledging that I really miss having a healthy body that’s able to participate in all of the sports I love    

  •  Having the courage to say no when asked to join friends for an evening out, trusting that they will ask again and not give up on me because of my illness

  • Making peace with the reality of a life that is largely lived indoors, and being much less active than I would like

  • Admitting the feelings of guilt I have about not being able to work and not advancing in my career

  • Accepting the feeling, whether real or created in my own mind, that I’m being judged for not trying hard enough

  •  Allowing myself to feel angry and frustrated because there is no end to this illness “treadmill”, and there is nothing I can do to change it.

I don’t have to save myself from these uncomfortable emotions by plastering on a brave, happy face when I feel like crap because let's face it, being chronically ill sucks. I don’t stay in this headspace all the time because I don’t feel this way all the time, but I do let these thoughts and feelings have their way with me when needed, knowing that I can always find my way back to a place of happiness and contentment.

Discovering the Buddhist art of being present to life just as it is, completely free from judgment, has been paramount in helping me learn to stay open to all of the thoughts and feelings that arise through chronic illness. The practice of remaining open-hearted toward all of my experiences has reduced my resistance to the various difficulties I face and has given me the ability to unconditionally accept the circumstances of my life. Viewing my challenges with kindness and treating myself with compassion empowers me to make good choices for myself and helps me think creatively about the life I want to live.

Self-compassion has stretched me into learning how to accept help and kind words from friends where earlier I would have tried to go it alone because I didn’t want to show weakness or be a burden to anyone. I’ve also learned that when I’m having a pretty rough time physically it’s okay for me to say, “I don’t have to have a ‘productive day’ today; today I’m watching Netflix because that’s the very best and kindest thing I can do for myself."

This willingness to kindly do what my body requires by accepting help or resting for weeks on end is no longer something that makes me feel less-than or weak; it provides what I need for living a full life. I’ve become truly happy again and am loving life and all the possibilities it holds, despite my illness and its restrictions.

Self-compassion has given me what I need to look at my life and situation in a way that says, ‘My illness isn’t who I am; I’m someone who still has a lot to offer to the world’. I’ve become excited about my life and what may be on the horizon instead of being fearful of what might happen. My illness has benefited me by giving me the time for some much-needed self-reflection, which has led to a greater insight into who I really am, how much I’m loved, what I love, and the many ways I can still add value to the world. It feels a little like I’ve been given the gift of a new life.

While I can no longer do many of the activities I love to do, like windsurfing, tennis, golf (just about any sport really), I have begun to discover that I am much more than the sports I played or the career I had. I have a wide variety of loves in my life that previously I either ignored or just hadn’t noticed. But because my health has thankfully required me to slow down, I am discovering them now.

I am so much more mindful of the beauty, life, and love I see all around me every day. I enjoy it in the deep and meaningful conversations and experiences I have with my wife, I experience it in the wonder of nature and the myriad shades of green that bloom at the beginning of spring, I see it in the care-free dogs that are affectionately taken for walks beneath my balcony every day, I hear it in the laughter and joy of the children playing at the nearby school, and just as nature and dogs never seem to worry about what’s in the future, these kids have yet to discover that worrying and looking ahead is a “thing”: they are just revelling in each moment.

Learning to live this way has not eliminated my illness and symptoms, but it has started to remove the suffering caused by focusing on what is wrong, what I can’t do, and what could go wrong. I have slowly found myself realizing that, although I’m not healthy, and physically I sort of feel like I’ve been hit by a bus every day for the last 5 years (and that bus always seems to back-up to hit me one more time just to be sure I don’t walk away without a limp - I hate that dang bus), I’m not suffering anymore. I’m learning to live life defined by what I love, not by my illness.

Because of poor health, my career may have stalled and my physical abilities may be limited, but my capacity to be curious, to take a deep inner look at myself, to learn self-compassion instead of self-pity, to try new things that I would have been too fearful to attempt in my old life, to be willing to take chances like I’m doing right now by writing, have flourished.

At 51-years-old I’ve finally realized that my purpose is to keep discovering what I love, doing what I love, sharing that love with others, and showing those closest to me that they are truly and deeply loved. Chronic illness might have the ability to impose boundaries on my life but it will never be able to set any boundaries on the things I love.

I find myself no longer waiting for my illness to depart and my life to arrive; I truly have a life I love right now.

Within the boundaries set by a mysterious neurological condition, Chad loves spending his available energy enjoying good food, getting lost in different worlds through writing and reading, strolling in the sunshine, watching sports and being an armchair quarterback. He lives on the Canadian Prairies with his wife (who is also managing her own chronic illness--what a fine pair).

Sidewalk Lessons

I’m sure you’ve heard the saying, “It’s not how many times you fall that matters; it’s how many times you get back up.”

It’s a great message, but to me, at least in my circumstances, it doesn’t tell the whole story. Don’t get me wrong, getting up from a fall, whether physical or emotional, is incredibly important. Learning to pick yourself back up is a valuable skill, and is representative of a special type of grit and determination that’s needed to get through the realities of life. But there’s more to it.

As someone who is well-versed in falling after nine years living with Miyoshi Myopathy, an adult-onset form of muscular dystrophy, I’ve become an expert on the subject, for better or worse. I’ve fallen all sorts of ways – I’ve tripped on cobblestone sidewalks, I’ve stumbled getting off a bus, and I’ve been knocked over by oblivious strangers engrossed in their iPhones. I’ve even fallen over after sneezing. Even with the greatest of precautions, it doesn’t take much to fall, especially now that I’m nine years into this disease, a physical shell of my former self.

As a serial faller, it often feels like the famous saying has been turned around on me: It’s not how many times you pick yourself back up, it’s how many more times you’re going to fall now that you are upright again.

Falling, as you can imagine, is no fun. It’s not something I’ll ever quite get used to. But thankfully, so far, I’ve gotten back up every time, although in the last few years I’ve needed the help of others to do so. Assistance or not, there is pride in getting up after a fall, dusting myself off, and continuing on with life.

However, it isn’t from the act of getting back up where I’ve learned life’s most important lessons; it’s on the ground post-fall. It is here –on the cold, miserable pavement, or the hard wooden floor, or the cushiony carpeting (oh look, the Cheerio from yesterday’s breakfast), where I’ve had to confront the sobering realities of my life, mainly, that my disease isn’t going to get better anytime soon, if ever. Lying on the ground, unsure how I’m going to get back up, is terrifying. Every time it happens, my body trembles, my heart races uncontrollably. I often feel like I could pass out, that is, if I don’t throw up first.

But it is in these most frustrating moments after a fall where I have found the resolve to keep going, unlocking strength I never knew I had. I found this resolve - to continue living my life despite the weighty knowledge of what lies ahead – ironically enough, after trying to give up.

It was middle of winter in early 2013, and I was going on five years dealing with increasing muscle weakness that I knew was only going to get worse with time. That night, on a side street in Cambridge, Massachusetts, I fell for the umpteenth time, but it was the first time I couldn’t pick myself back up using my own strength. Instead, I had to crawl over to a parked car and use it as leverage to stand up again. When I finished, exhausted, I plopped myself onto the hood. I wanted to quit life right then and there.

Over the years, I had suppressed my emotions, putting on a strong façade to keep myself sane day after day. But on this night, it was all just too much. I had fallen twice in five minutes, and if the car wasn’t there to bail me out, I might have taken myself up on the alternate option to crawl under a nearby bush and wait for life to pass me by.

In those dark moments on the ground, when I failed over and over again to get up – first with my body weight, then with a flimsy metal fence that never had a chance to support me - I thought this was going to become my life, my future. Fall. Get up somehow. Fall again. My life reduced to perverse clockwork.

On the hood of the car, I felt an exhaustion I had never felt before, and have never since. It was a combination of physical exhaustion and emotional burnout. I had used all my strength to get up onto the hood, after crawling 20 feet to even get to the car, after failing twice to get up, after having fallen again five minutes before that and pulling myself up using a stronger fence further down the street. Giving up was not only an emotional decision, it felt perfectly rational. How could I deal with this every day? And it’s supposed to get worse from here?

Deep down though, I couldn’t give up. Maybe it was my subconscious giving me a jolt, telling me to snap out of it, or maybe it was a divine nudge reminding me I had so much yet to live for – I believe it was both. Eventually, I pried myself from the hood of the car and walked, ever so carefully, the remaining block to my apartment.

It was only months later that I could fully understand how that experience was a turning point in my life. The falls haven’t gotten any easier since then, but in finding my inner strength that night – and I had to really be pushed to brink to find it – I gained a new confidence. I realized that if I could withstand the pavement, the failed attempts to get up, the dark thoughts that swirled through my mind, even the knowledge that falls like this would become a regular occurrence, I could withstand anything. Suddenly, dreams that were dashed no longer seemed impossible.

Doors that had closed in my face opened once again. No problem seemed insurmountable. This audio clip, recorded on the phone and edited by Dr. Annie Brewster, chronicles my nine-year journey, back to 2008, when I was first diagnosed and started feeling symptoms, on through the present day. My life these last nine years feels like a three-act play – Act 1: Denial, Act II: Depression, Act III: Acceptance.

I am in a better place today, although I still fall, and still occasionally wonder if there is a limit to how much frustration I can take. But it is from these moments on the ground, when I am forced to confront the magnitude of my disease, watching helplessly as the mobility of my former life slips further out of reach, that I have learned to let go. To let go of the feeling of permanence that each fall brings. To let go of the notion that this is all my life has been reduced to. To let go of what I can’t control. Falling is merely one activity – albeit a miserable one – in a life that is so much more than my muscle weakness. Falling can be physical or emotional, but it happens to all of us, repeatedly, even with the most careful planning. I hope that my story – and my lessons learned from the pavement - can be one of many stories that you can refer to when life knocks you down.

Because, as I learned the hard way, and as the great saying should have gone, it’s not how many times you fall that matters. It’s not even how many times you get back up. What matters is knowing that you are going to fall again, and when you do, that the sidewalk is powerless to stop you. You are more resilient than you know.