Posts tagged 30-50
Journeying: Towards Healing, Wholeness, and Authenticity

My mysterious symptoms began when I was 11 years old.  I liked to play soccer, create art projects, and ride bikes with friends to White Hen to buy candy.  I was the student council class president.  I was also as pale as a ghost, barely weighed 70 pounds, and continually missing school because I was sick.  High fevers, headaches, and chills—that was my deal. The pediatrician repeatedly told my parents, not me, that I had the flu.  After almost a year of recurring flu, my parents wondered if I was being misdiagnosed and sought a second opinion.   I remember being nervous as I overheard phone conversations my mom was having, asking friends for pediatrician recommendations, wondering what was wrong with me.

After one visit, this new pediatrician didn’t think I had the flu, admitted he didn’t know what was wrong, suspected migraines, and sent us to an allergist to do sinus testing.  And so my medical journey began.  From specialist to specialist, until an infectious disease physician referred us to a gastroenterologist for a colonoscopy and, there, my atypical presentation of Crohn’s Disease was discovered.  Crohn’s Disease causes inflammation in the lining of the digestive tract, it can be painful and debilitating, and while there are therapies to reduce symptoms, there is no known cure. 

 By the time my Crohn’s was diagnosed, I’d missed a ton of 6th grade and the one month session of overnight camp that I’d already packed my duffle to attend: T-shirts, shorts, sneakers, swimsuits, beach towels, extra long sheets for the bunk beds, tennis racket, cassette player walkman and headphones, berry flavored lip gloss, and carefully selected stationery to write friends and family at home.  I remember the morning of the camp send-off.  It was a warm, clear, sunny day.  I went to breakfast at McDonald’s with my mom, my younger brother, camp friends, and their parents. Then, we all went to the camp bus stop at the local high school.  While my brother and my camp friends loaded the greyhound buses, buzzing with excitement and nervous energy about spending a month away from home, I stayed back with the parents and waved goodbye as they drove away.  Since we were surely going to figure out “what’s wrong” soon, I planned to go to camp late.  I should have known when I started taking out “just one shirt” from the royal blue duffel bag on the hallway floor that I would soon be unpacking the entire bag.  That summer I watched the fun from the sidelines at home.  Through letters from friends, I heard about camp sneak-outs, gross cafeteria food, and which boys the girls liked.

 Twenty-one years later, now 33 years old, I am just beginning to realize the impact living with Crohn’s has had on my life, the force it has been in shaping my identity.  Watching the fun from the sidelines, as I did on that summer day when the camp buses drove off without me, is a metaphor for how I spent a lot of my time growing up.  Beginning at age 12, I needed to take medication three times a day.  Staying healthy meant restrictions in my diet.  No carbonation, no fake sugar, no drinks from a straw, no chewing gum, no popcorn, no greasy food, no, no, no...  Living with Crohn’s meant no drinking, which meant when friends began experimenting with alcohol, guess who was always stone cold sober and, as soon as I turned 16, the perpetual designated driver?  Me.  Then in college, everyone drunk, having fun, enjoying life.  Not me.  All nighters?  I couldn’t do it.  I stayed up most of the night with my boyfriend who was in town during the fall of freshman year and I ended up in the hospital the next day with a high fever and chills. I was left behind when my parents and brothers vacationed in Mexico when I was in college.  They didn’t take me because they didn’t want me to get sick from the food or water. To be fair, my parents planned to travel alone, but my brothers wheedled their way in on the trip.  Even though I asked to join, I was told “no.”

 The thing is, the missed opportunities for fun, the regimented lifestyle, and the premature responsibility, none of that includes the actual medical interventions: The surgeries, hospital visits, blood tests, IVs, colonoscopies, physical exams, medications, allergic reactions to medications, blah, blah, blah…  While I have a difficult time remembering my medical experiences in their entirety, I do remember certain pieces vividly.  I remember being in the hospital, a male African nurse trying unsuccessfully to put an IV in the top of my skinny little left hand.  I was sitting in a chair next to my hospital bed.  He was standing over me in his scrubs.  I felt helpless, paralyzed with pain and terror.  That was probably close to 20 years ago. A million times since then, I’ve been poked, without flinching.   I worked in a Neonatal Intensive Care Unit; I’ve seen blood, guts, vomit, and babies who are no longer living.  Yet, if I’m in a medical setting and hear the voice of a man with an African accent, I stop dead in my tracks and feel like my heart has momentarily stopped beating. 

 In every medical experience since that fateful IV, I plowed ahead—strong, focused, determined, and without complaint.  I pushed my body to the limit, training as if for an athletic event, but really the event was life.  If my doctor said six weeks post surgery I could begin more intense physical activity, on the 6-week mark I incorporated jogging into my walks, turned jogging into running, and soon was back where I started or stronger.  I’d puke in the trashcan on the side of my high school’s track after running just one mile before evening tennis practice.  Even though I can run for miles in the morning on an empty stomach, I couldn’t run after having eaten breakfast and lunch.  My digestive system wouldn’t allow it.  I coordinated with college professors to have coursework sent to me while I recovered at home from surgery my junior year.  I went to the gym to walk on the treadmill during the polar vortex because I needed to get my legs working again.  I went to yoga when my hands were numb and did poses on my forearms rather than my palms because I needed to use my body in a positive way.  I needed to feel what it was like when my body was working for me, not against me.  I needed to be in charge of my body, make it do what I wanted it to. 

 My family fundraised for the Crohn’s and Colitis Foundation of America (CCFA) for 15 years and I volunteered for CCFA for over a decade.  I created the Pediatric Gastroenterology Family Assistance Fund at University of Chicago Hospital.  I’m proud that I didn’t allow Crohn’s to stop me from achieving, from leading an active, full life.  I’m proud of my philanthropic endeavors and the ways my family and I gave back to the GI community.  I wouldn’t change any of that.  I just wish I’d stopped for a minute to be more present in my own experience.  By never allowing the space to realize or fully understand that my experience was not typical, I think I did myself a disservice. 

 Several months ago, I started seeing a psychotherapist for the first time in my life, ironic, since I’m a clinical social worker.  I sought this support for a personal, important, yet non-Crohn’s-related reason.  My draw to therapy had to do with me needing to feel alive, to feel passion, excitement, connection, desire, and understanding… to feel whole.  I needed to grieve and I was overflowing with anger.  I felt panicked and sad about what I had missed and what I felt I was still missing.  I wanted to feel really alive, like heart-pounding-out-of-my-chest alive. 

 However, when I began to talk, so much of what I shared came back to living life with Crohn’s.  I couldn’t believe that I’d missed how Crohn’s influenced not only how I navigate my life, but who I am, and how I act.  Here I was, no longer operating in survival mode, no longer dissociating, finally aware of my own body, and my feelings, thoughts, and emotions were pouring out of me like a fire hydrant, burst open, flooding the street.  It was as if my Crohn’s flare during my recent pregnancy and the traumatic delivery that followed had opened the floodgates of awareness of 20 years of experiences of growing up with Crohn’s.

 I had serious health issues while pregnant with my second baby.  Reflecting back, I see that the ailments came on in a fashion akin to that of my initial Crohn’s symptoms 20 years prior.  The “we don’t know what’s wrong with you” experience was similar as well.  The chills, headaches, and fevers during pregnancy paled in comparison to the morning when I woke up with no ability to move any joints of my lower extremities.  None.  My symptoms were a mystery—a blood clot?  MS?  Just Crohn’s?  My world-renowned GI doctor was stumped. “You’re a bit of a black box,” he said.  I sat on the crinkly white paper on the medical exam table and asked, “So what’s the plan?”  My doctor’s response was “We’ll figure something out.”  In my mind, that loosely translated into “We have no freaking clue.”  I was terrified.  It was unclear if I’d: A) Need another bowel resection B) Need to try a new medication that “increases the risk of getting a rare brain infection that usually leads to death” or C) Wait for the doctors to figure something out.  I didn’t share it with anyone at the time, but during that pregnancy, I felt I might die, or that I’d potentially live with a severe disability, never able to go running, do yoga, or play at the park with my kids again. 

 With so many drugs pumping through my body and so much illness during pregnancy, I was also secretly scared that my baby wouldn’t be healthy.  There was nothing to do except hope for a good outcome and wait for delivery.  After 15 hours of un-medicated labor, a drastic drop in my blood pressure, and baby’s dangerously low heart rate, I was rushed to the operating room for an emergency c-section.  I felt the wind blowing against my face as a slew of doctors and nurses raced my bed down the corridor through the automatic doors and into the bright lights.  My heart began to pound, my breath became rapid, tears began to flow, and panic set in.  I was acutely aware of what was happening, yet, simultaneously feeling in an out-of-body-experience.   At the last second, a voice of one of the medical professionals from behind me on my left yelled, “Heart rate’s back up!  Cancel the Crash (emergency c-section)!  Cancel the Resus (neonatal resuscitation)!”  I had a brief moment of relief, but medical distress continued and a c-section followed just minutes later.  While in the recovery room holding my brand new baby, swaddled in the white fleece hospital blanket, wearing a little blue knit hat, I cried.  Not happy tears because my baby was healthy.  I cried because I failed.  My body had failed, again.

 Until now, I have not shared the intimate details of this all-consuming process of self-reflection and self-discovery that began for me many months ago.  I have been scared others wouldn’t understand, that they would judge.  I had, however, confided in Rebecca, a dear friend of mine.  Rebecca is soft-spoken, wicked smart, a talented mental health professional, and knows trauma.  She was also my roommate in graduate school, and has taken me to the ER, stayed with me overnight until my parents arrived, calmly rubbing my legs, my body shivering and shaking with chills, my fever dangerously high.  During one of our many phone conversations, I was teary, struggling, trying to make sense of my life as if I was working to solve a physics problem, yet didn’t have enough information and didn’t know the right equations.  She responded, “Al, this is your journey to find your authentic self.”  I laughed.  Leave it to Rebecca to name this humbling, painful, and often lonely process something so pretty, so succinct… so… accurate.  Rebecca’s description resonated with me. 

 I continue along my journey towards healing, wholeness, and authenticity.  I am starting to integrate the fragmented parts of myself, the decades of living in a regimented, need-to-stay-healthy way.  I’m beginning to acknowledge the medical trauma that my physical body endured as threats to its very being, but to which my conscious awareness was not connected.  I am peeling back layers of emotions I never recognized and feelings I never felt.  I am having revelations about decisions I made and paths I chose.  There is so much.  I can’t contain it in my body and mind anymore.  I need to share it so that I’m not carrying it alone.  As I bring to my full awareness this new, yet old, information, I continue to be stunned.  And each time I find a new piece of clarity along the way, the most interesting thing happens: my body gets warm, yet feels chilled, my lips feel tingly and chapped, and I feel feverish… just like I do almost every single time a Crohn’s flare is beginning.  

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.

Living with and learning from a potentially fatal, chronic disease

What if you were suddenly diagnosed with a potentially fatal disease just when your life, work and marriage were on track and your plans to start a family where underway?

This is what happened to Sue R. Levy. In 2008, at age 37, she was diagnosed with Pulmonary Lymphangioleiomyomatosis, otherwise known as LAM. LAM is a rare, chronic, progressive lung disease in which the lungs fill up with cysts. The result is gradual destruction of the normal lung architecture, compromised breathing, and in many cases, eventual lung transplant.

Fueled by estrogen, LAM primarily affects women in their childbearing years. With only 1300 documented cases in North America, LAM is poorly understood and at present no therapies of proven benefit exist.

Prior to diagnosis, Sue would have defined herself as happy and healthy. She had a successful career as a marketing executive, she was happily married, and she and her husband had decided to start a family. Though they struggled with infertility, undergoing six unsuccessful rounds of IVF, Sue still felt that this would work out eventually, and that perseverance would pay off.

In her words, “ My whole life I thought the way the world worked is that if you were a good person and you worked hard you could avoid bad things”. LAM changed everything.

Suddenly, Sue was forced to redefine herself as someone with a chronic disease and confront her own mortality. In addition, she had to let go of some of her dreams, first and foremost her desire for pregnancy, as the high levels of estrogen associated with carrying a child would accelerate her lung destruction. Initially, she was angry. What had she done to deserve this? Over time, though, her perspective shifted. She came to accept her diagnosis and she let go of her preconceived notions of how her life “should” unfold.

Today, Sue would say that living with a chronic disease and an uncertain future, while obviously challenging at times, has improved her life dramatically. Her disease has helped her to get in touch with what she really cares about, and has set her life on a new course. With the goal of educating and healing herself, she went to school to study nutrition and became a natural foods chef. In 2011, inspired by how great she felt after making some lifestyle changes, she quit her marketing job and started Savory Living, a nutrition and healthy eating company that provides online nutrition and healthy eating classes and cooking classes, helping others to “eat well and feel better now.”

In addition, Sue and her husband now have two young daughters, conceived using egg donors and a gestational carrier. While the journey was difficult at times, the end result is a beautiful family. Sue feels happier and healthier than she ever has.

In an upcoming follow up piece, Sue will share more about her struggle with infertility and her journey to motherhood.

Originally published on WBUR Commonhealth Blog on April 4th, 2014.

 

Resources:

Pulmonary lymphangioleiomyomatosis:

 

For information, services, and help for yourself or someone you care about:

 

1)    To learn more about LAM, visit http://www.thelamfoundation.org/what-is-lam

 

2)    To listen to patient stories and find more information about LAM, visit http://www.lam.org.nz/videos.htm and http://lamaction.org/for-patients-their-families/patient-support/

 

3)    To locate a patient support group:

 

301-592-8573 is the number for the National Heart, Lung, and Blood Institute Health Information Center that can provide information about patient support groups.

 

1-877-644-5864, extension 3 is the number for the National Heart, Lung, and Blood Institute Health and Information Pulmonary Vascular Medicine Branch, which can also provide this information.