Archive for the ‘Illness narratives’ Category

I had the most wonderful blogpost in mind for this past Saturday morning. Just one more read-through of the article Friday night and…………….. Not so fast. Snail mail came early Friday afternoon, along with the letter that I had hoped I would never see—my rejection letter from the University of Nebraska American Lives Series. My memoir, The Autobiography of a Sea Creature, about infant surgery would not see the light of day. Not yet anyway.

I came close, the letter hinted. Colleagues had consulted one another, the market was considered, their line of titles discussed; “reluctantly” though, the manuscript was returned. Woe is me set in. Deep disappointment hit. Crying helped. Blogposts would wait.

My depth of feeling was not simply due to the dashing of the chance to go more public with the infant surgery issue and gain much needed support for my creativity and talent. It was one more loss in a string of them—the death of my brother, Wayne, November 2010; the death of a dear friend, Robert, June 2011; my accident ice-skating in May 2011, where I sustained a concussion and whiplash; and now a dear-to-my-heart book I’d written, and then rewritten more than several times, rejected October 2011.

Rather than plunge deeper into the losses, I want to tell you why Sea Creature is an amazing and important manuscript. It’s the story of my discovery, as an adult, that I did not receive anesthesia for pyloric stenosis stomach surgery at three weeks old. It’s the story of my partner and me taking care of my mother who had dementia in her final years. It’s the story of a life lived full of thrilling highs and abysmal lows, unknowingly besieged by post-traumatic stress (PTS). It’s a story about how sea creatures and certain key people saved my life. It’s about my personal struggle to honor the seed of my intrinsic beauty, inherited at birth. It’s a human story about seeking freedom.

I trust that 2012 will be kinder and that Sea Creature’s time will come. Thank you all for sharing in my journey.

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Two weeks ago, I attended a storytelling workshop, Retracing Our Steps (But I forgot the bread crumbs), given by Dr. Hetty Rodenburg, a medical doctor from New Zealand. Her own personal story was one of the most moving and inspirational stories that she shared that day. Years ago, she had signed up for a workshop with Dr. Elisabeth Kübler-Ross, the renowned psychiatrist famous for her work with the dying, thinking she would gain knowledge that would benefit her patients. Instead she confronted her own grief and cried for five days. Hetty is a survivor of Nazi-occupied Holland during WWII and her father had been incarcerated in a concentration camp when she was a young girl. When he returned a few years later, cancer had overtaken him. As an adult, she was still filled with tears and rage over his fate and that of her family during this difficult time. After this workshop, she trained to be a facilitator of the work of Dr. Kübler-Ross, during which time she released the rage and fear and began to live guided by unconditional love.

Hetty’s book, Dreaming a Lighthouse: A Creative Partnership–a teenager, her doctor & Cancer, is about her healing relationship with a young woman named Wendy, in which she discusses the “Personality or four-quadrant model” that Dr. Kübler-Ross used for teaching purposes. Here’s an excerpt: “The first [quadrant] is the physical . . . our body, and how we observe and experience the world through our senses. We see, hear, smell, we taste and touch. The medical profession mostly focuses on this quadrant. It’s only twenty-five percent of the whole of you . . . In the second quadrant, called the emotional, we feel and express ourselves through our emotions, like fear, love, grief and anger, among many others. [The third] is the intellectual, where we try to make sense of the world through our logic. We ask questions, we rationalize, we analyze, we read books and we try to find the answers using our mind. And the last one is our spiritual quadrant. Here we experience the world through creativity, dreams, art and music, and through our connection with nature. We contemplate larger questions such as “What is the purpose of my life: Is there a God? What is God? Who and what am I?’ . . . There is so much potential healing power in the spiritual quadrant. We can use nature, prayer, meditation, faith and our belief in God or in the universal energy. We can use the arts, music and our creativity. It’s a place where we can surrender and ask for help, wisdom and guidance. I believe we are held and comforted and loved by something much bigger than ourselves. Our soul is not cared for by human hands.”

My blog is largely about this spiritual quadrant. Healing happens when we connect with this innate part of ourselves. The more we keep this connection alive, the more our healing is hastened. The book Dreaming a Lighthouse is filled with Wendy’s beautiful artwork and thoughtful poetry and journal entries. Healing stories are also part of the narrative. Dr. Rodenburg brings a much-needed approach to medicine and to our world. She reminds us to live in balance–in touch with all our quadrants. And she reminds us to live from the heart as one.

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This past Wednesday, I spoke in the Humanities class of my friend Dylan Eret at the community college where I teach. His class had been studying images of monsters as representations of culture and society. They had also been reading illness narratives–expressions of the individual as well as the social context in which they were written.

In my presentation, I spoke about my surgery for pyloric stenosis at three weeks old and my attempts to understand, through writing and art, the impact of this on my life. Below are two of the images I shared in the class. They show the idea that I had held of myself as a baby–”Bad Baby” and  “Mummy Baby.” That chapter in my life and in the life of my family, when chaos reigned and my survival was uncertain, was monstrous in a way, and my mother’s descriptions of me before  and just after surgery burned horrifying images onto my brain. I bring these images out of my subconscious into the light of day for healing, insight, and reconciliation.

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Wendy here. I’m so happy to introduce Roey to the readers of myincision. What follows is his brief biography and his autobiographical piece, “The Bellow of a Resected Colon.”  Please direct your Comments to Roey. I hope he hears from you.
My name is Roey Shmool. I was born with Hirschsprung’s disease and had 7 surgeries by the time I reached seven years of age; 6 between three months and two years. I am the Producer/Director of the documentary film, “Wear it on the Outside,” which is currently in-production. The film gives identity to the trauma & stigma associated with congenital colorectal disorders. The film’s trailer and more can be found on the film’s web site: www.wearitontheoutsidefilm.com

I discovered My Incision not too long ago while researching early medical trauma. An hour or two before finding the blog, I thought to myself, ‘when will I find someone or something that relates openly to my surgical experience?’ In between the lines of studies and related articles that crowded my screen, My Incision stuck out as a beacon.

The Bellow of a Resected Colon 


I remember how excited I used to get in anticipation of a trip to Israel. I’d know up to three months in advance of my summer break from school if we were going. I’d be ecstatic — I loved to fly and had a healthy infatuation with aircraft. I would stare out my family’s 6th floor window overlooking Queens Blvd. Our building was located underneath LaGuardia Airport’s flight path. Planes taking off and landing; 727s, 737s, DC-9s, and an assortment of other aircraft would grace the skies above, and in the distance. The only noise I could tolerate was that of a roaring jet engine. Landing gears up, then down, was the common pattern. It was exhilarating to think I’d be on one in just a few months. Of course, I proudly declared that I’d be on a much larger plane heading to farther places.

But trepidation took over with each burst of excitement. My childhood memories of Israel are meshed in jubilant play and wild stimulation of a whole other world being lived outside of Queens. However, all this would be accompanied by doubt and frivolous fears. For instance, I hoped I wouldn’t die before the date of departure, or something else more painful that would prevent me from going. I was five.

I appeared to be a happy, well-adjusted child, despite certain events and incidents that proved otherwise. I shared little with anyone. Even as my stomach churned I chose to take the Fifth. I was ashamed, and still am in some way. Though I understand that my health has improved significantly, the pain is entrenched in my being. Thus forcing incredible waves of pain over my body at the least opportune times. The sensation begins in my abdomen, then streaks across every part of my body before settling in the form of tightness in my shoulders. I reached a point when it became impossible to freely function without feeling that nasty sting. A wavelength unrecognizable to the external world. One that I only knew existed.

Since I didn’t have an outlet, I stored it all inside a virtual chest, locked it with a padlock, and carried it up the stairs into the attic. But, like me at the time, the attic smelled and the odor made my body uninhabitable. So, I ran down the stairs, shut the door behind me hoping never to go back. Until now.

In recent years, I’ve been slowly climbing those stairs to the attic, with the key in one hand and a flashlight in the other. I finally made it back…

There is dust everywhere. Most evident in the sliver of light my flashlight carves into the darkness. I’m hesitant, my vision impaired by fright, yet I still know my way around. I find the chest and insert the key into the lock — I lose consciousness before I can turn it.

My eyes open and the chest has disappeared. I find myself alone in a brightly lit room. The walls are drab, devoid of any real color. I’m in the hospital. How old am I? Where is everybody? Where did they go? I’m in a plastic box, possibly glass, who knows. Oh, I’m not alone, there’s a baby in the same kind of box to the right of me — am I a baby too? How old am I? Where did everyone go? I hear something — is that, can’t be. Am I dead? Is this heaven? Hell? Why doesn’t anybody answer me!?

The radio is playing “Imagine.” The sound is so peaceful it seems to have relaxed my roommate. Did someone just come inside? Wait, wait, wait, those hands are huge! Where are you taking me!?

I’m being carried, the whole room is visible; rows of baby-filled plastic boxes stretch out as far as the eye can see. The music is being drowned out by the incessant noise of countless babies wailing for dear life.

I remember now, my mother told me that I was in the hospital when John Lennon was shot, but I was older. Let’s see, I was born in March ’79 and he was killed in December ’80. I’m over a year old, why would I still be in the NICU?

Is that my mom standing in the hallway? My arms are bigger and this chart is neatly organized. Nice Job! I’m wearing white pants so I must be a nurse. How did that happen? Oh look, my surgeon! Dr. Bronsther really was a large man. He’s telling my mother something. What is he saying? She looks tired and upset. Am I in the room behind them? I need to find out. How? Grab a stack of paper and pretend you’re looking for a patient, or a chart, or whatever it is people do around here!

“Excuse me, Mom…I mean Ma’am,” I said as I slipped by her. She really did have that hair then, wow. There are two cribs in the room, a toddler in each. Which one is me? They’re coming in, quick, appear to be busy. Dr. Bronsther acknowledged my presence, rather the nurse’s, however, he didn’t seem to wonder what I was doing in the room. He and my mother walked over to the crib by the far wall, that must be me. I walk over behind them and stretch my neck over their shoulders like a crane. They’re talking about my surgery from a couple of days ago, but with all the white noise I can’t hear them clearly. Man, I look bad. I mean, I’m cute and all, but my skin is whiter than the sheets beneath me. My abdomen is dressed with gauze. Each time the doctor touches me I cry, I reach for the sky — I must be in pain.

My parents never heard of it — “Hirschsprung’s disease?” When I arrived to this world thirty-one years ago, I didn’t come empty handed. The Hirschsprung’s stands for Dr. Harold Hirschsprung, the Danish pediatrician who discovered the disease in the late 1800s; the disease he first described is the absence of nerve cells in all or part of the colon. For me it was partial and the more common form of Hirschsprung’s disease called short-segment HD, which affects the rectosigmoid portion of the colon. In almost 20% of HD cases, patients are born without nerve cells beyond their descending colon up to their small intestine, and in some instances, the short intestine is involved as well. This is known as long-segment HD. Not having ganglion cells in your colon, in short, means your brain and intestine do not communicate properly and waste doesn’t pass through the affected segment due to the lack of propulsion. If a patient goes untreated, the results can be lethal.

After spending my first week of life in one hospital, I was transported to another by ambulance. Subsequently, I lounged in the NICU for another month or so before being allowed to go home. At four months, I got what software programmers regard as a plug-in, patch, or extension, as a colostomy. I could only imagine what I thought then, but I can try, “I sleep. Now I’m awake — Holy ^$#@! My transverse colon is waving at me!” My mother tells me I loved playing with the colostomy bag so much, following the operation to close the stoma seven months later, my little hands continued to search for its existence.

Several weeks before the colostomy closure, the surgeon performed colorectal magic, the Pull-through procedure. The operation of all operations if you too have shoddy pipes. In this surgery, the sickly segment of colon is removed. The healthy bowel is then attached directly to the anus. I may have used the term “magic” a bit too liberally; life saving, definitely, but for some it isn’t uniformly magic. First of all, surgery of any kind isn’t mystical; it’s a controlled stab to the body when the patient is too drunk to remember how the brawl even got started. Also, surgery at any age comes with its share of baggage; next to neatly piled complications, folded traumas and a toiletry bag of hidden pains fill each suitcase.

For good measure, let me not exclude the role of nurture and environment in my upbringing. I believe certain factors of my psychologic response could’ve been treated differently, rather than perpetuated. This doesn’t only include my parents, but the physicians and nurses I was under the care of. Don’t get me wrong, I don’t blame them for negligence or foul play — I’m breathing and writing, aren’t I? But there was an aspect of understanding that was missing. It is still unclear to me why I was incontinent for so long despite the doctors’ emphatic prognosis for the better. Some say the Pull-through procedure damages the rectum, others say its a direct result of the Hirschsprung’s despite having the affected bowel removed, and I believe it was the combination of the two, compounded by the psychologic impact later in life. Only recently have I gained total control of my bowels. Obviously, the world has changed dramatically since I was a child: the internet, growing acceptance of the body-mind connection, and significant changes in how we understand an infant’s perception of pain.

There are a multitude of ways to prevent and manage emotional disorders, both for children and adults coping with the traumas of hospitalization and surgery. Psychotherapy, neurobiological interventions, and psychospiritual bodywork can work in any combination. What works for me might not work for you, and vice-versa. The exploration is subjective and one should embrace the journey with an open-mind, courage, time, and energy. It is my intention, and hope, to research, develop and share my own experiences, helping others to do the same, and supporting the work of those directly involved in mitigating the effects of early medical trauma.

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I finished a draft of my book proposal. Hallelujah! I will be editing it for surface errors this Wednesday evening and then giving it to my partner, Griffin, for the last going over. By the second week in November, the proposal, which includes a sample chapter, will be in the mail to an agent! I am more than thrilled.

A little background: I began the memoir, The Autobiography of a Sea Creature, back in 2001, I believe. I completed an entire draft by 2002, got feedback from my writing group, and rewrote it. I added more material and probably cut back some—it’s been so long, I can’t remember. I only know that the book was revised at least twice before 2005 when I had to move my mother out to California.

At that point the manuscript sat, and I focused on caring for my mother (she had dementia and needed attention) and writing poetry (short poems were all I could manage to write). My mother died in December, 2007, so it was probably the summer of 2008 when I finally began working on Sea Creature again. Two drafts later and here I am perfecting the book proposal. See how long it can take to cook a book? I’ll keep you posted.

For a sample from each chapter, see my memoir page above. Also, see my newly created my poetry page.

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I want to share a tiny piece of my memoir, The Autobiography of a Sea Creature, with you and the photos from which the memory was drawn. The excerpt is taken from chapter one in which I narrate the story of my surgery for pyloric stenosis and some memories of my early relationship with sea creatures.  After reading the excerpt and comparing it with the photos, you’ll see just how much of memoir, though often unintentionally, is fiction:

A milestone photo was taken of Dad and me when I made it to one year old—a close-up photo of our faces, his close to mine. He is a beaming full moon. Scrubbed and clean, he glows happily, his eyes smiling. I am happy, too, smiling what my mother calls a classic “buttermilk smile,” no teeth but lips unturned. In front of us is a huge sheet cake and a mushroom candle at the center with a white shaft and a red cap with white polka dots. We celebrated. I had made it out of the danger zone.

For one thing, I am not smiling at all, am I?  My father is. Plus, I merged the two photos in my mind because as you can see, there is no cake in the first photo. Weird and surprising.  In a way, it makes the memoir seem kind of fake or in writerly terms, the narrator seems unreliable.  I suppose I am in some ways, but I like to think I’m reliable when it counts–with regard to feelings and sensations. I try to include accurate details, but perhaps what is most memorable is how I felt.

A paraphrase of Maya Angelou’s wisdom encapsulates my philosophy about memoir: You may not remember what someone said or what someone did, but you will remember how he or she made you feel.

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Last week, I made a presentation in my friend Dylan Eret’s class in Humanities at the community college where I teach. The subject was Illness Narratives, and I spoke about my surgery and the creative process I engaged in in order to write my memoir.  To help students get a real feeling for this creative process, I asked the students to think about a scar or scars that they have. It could be a real scar or an emotional scar. I asked them to draw one or however many of them. Then I asked students to write words associated with the scar. The words did not necessarily have to tell a story. They could write associatively, that is, whatever words or phrases that came up. Writing the narrative was also an option–the story of the scar in sentences as in first this happened, then that. To complete the exercise, I suggested that they pair up to discuss the image or images that they’d drawn. (They could also choose not to.)  It was wonderful to watch the students busily engage in drawing, writing and sharing.

In order to write my memoir, I made a series of pastel drawings. The first was of my face as I was about to embark on writing about my experience of infant surgery. My face was one of confusion and terror. I was about to enter my scar so-to-speak, and I was flooded with fear. After two or three drawings, I made one of my scar, a wispy representation. The pictures that followed were full of the color red. One drawing depicted me as a baby, a huge knife slicing into my belly. In it, my eye looks dislocated from consciousness–very eery–a dead eye but alive. One of the final series of fifteen or so drawings shows a large orange egg split in half by black lightning.  I wrote words on many of the drawings or on the opposite side of the drawing. After sharing these pictures with several close friends and talking about what they represented to me, my memoir began to unfold, released or catalyzed by the process of artistic expression.  Images drawn unlock story; words can then create narrative.

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