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Archive for the ‘medical memoir’ Category

I’m off to The Healing Art of Writing Workshop at Dominican University in San Rafael, California, a city in Marin County just north of San Francisco. I am hoping to make some strong connections with other writers and healers, affirm my dedication to writing, revel in the company of writers and artists who are devoted to or interested in the field of medical humanities, and learn new techniques and strategies for expressing oneself with clarity and power.

For the first time, I have submitted writing to the workshop that does not have to do with my memoir manuscript about infant surgery, The Autobiography of a Sea Creature. I wrote a brand new piece to share titled “My Mother’s Ears” about my mother’s hearing loss and the effect it had on me growing up. My mother’s hearing was damaged after undergoing a surgery at age twenty-five in which she had chosen to try an experimental anesthetic rather than suffer the debilitating effects of ether.

I had heard many times about how her hearing loss occurred, how the resulting tinnitus affected her, and how my mother attempted to rectify the problem early on. Tinnitus, according to Merriam-Webster online, is a sensation of noise (as a ringing or roaring) that is caused by a bodily condition (as a disturbance of the auditory nerve or wax in the ear) and typically is of the subjective form which can only be heard by the one affected.” The condition sounds rather benign in this definition but the ringing in my mother’s ears was so severe that she could not hear the outside world without hearing aids.

Growing up, my mother told the story of her hearing loss over and over in the same way each time. Similarly, she had a particular way of telling and retelling my pyloric stenosis story–the same time-worn phrases again and again. Repeating a story of trauma is one of the clues in identifying a person who may be suffering from PTSD. When we hear ourselves and/or others telling a story over and over in the same tone and with the same words, something is stuck or frozen. The person needs a little kickstart to begin the journey of healing from whatever wounded him or her.

I am only now discovering what it means to live a normal life, that is, one in which post-traumatic stress does not dominate. In a way, I’ve been reborn. I still have symptoms but I recognize them quickly and work with them in order to free myself from repetitive or stuck patterns of thinking and behavior. Just this morning in my meditation, I found myself frozen in a breathing pattern that I probably learned as a three-week old coping with acute pain after a stomach operation. My face above my nose is numb and my upper body completely rigid. This strategy enabled me to deal with a difficult situation as a baby but now when the pain and danger are no longer present, it is disturbing and limiting.

John Fox’s poetry workshops might help me out. Each morning at the workshop, I’ll be sitting in a circle of writers, listening to and discussing published poems and then writing and sharing poems of our own. Perhaps I’ll take this PTSD symptom on, the latest one calling for resolution. Writing a poem about my frozen head and shallow breath might free me up. In the meantime, here’s an affirmation I’ll try: I breathe naturally and fully, energizing my entire body. Breath awakens. Breath is my friend

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What an incredible reading I participated in at Open Secret bookstore in San Rafael, California this past Saturday night. Some of us published in the anthology The Healing Art of Writing, Volume One read to a super  supportive audience. David Watts, one of the editors as well as a contributor, introduced the event, making everyone feel warmly welcomed. The book is beautiful and can be ordered online from the University of California Press, UC Press.

Here’s the description of the book from the back cover: “The pieces in The Healing Art of Writing: Volume One originated at the conference of this name that brought together caregivers and patients who share a passion for writing about the mysterious forces of illness and recovery. A belief shared among all contributors is that being cured of a disease is not the same as being healed, and that writing poetry and prose brings us to a place of healing. Our subject is the body, our medical experiences widely diverse, our goal to express through literature what happens when a physical or mental anguish disrupts our lives.”

I read a small section from the published excerpt of my memoir manuscript, The Autobiography of a Sea Creature. What a thrill to share my work with such loving listeners. Afterward, wonderful people spoke with me about what my story meant to them. One was a neonatologist who offered compassion and understanding about what I must have gone through as an infant. His words meant so much to me and in this conversation, I healed a little more from the early trauma. I asked him whether the neonatologists of today attend to babies’ pain and he assured me they do. Babies have a pain score, he told me, and these numbers are not only attended to constantly by the medical staff but are available to the family at all times. This information was reassuring.

A videographer from the University of California San Francisco Medical Center came up to me afterward saying, thank goodness medicine has changed and that the doctors he meets at UCSF treat patients as human beings. They would never talk to their patients the way that the surgeon spoke to my mother after my surgery, he said. I was glad to hear his words. This supportive conversation was healing as well.

Finally, I had the most amazing conversation with two women who are my sister survivors in so many ways. I don’t have permission to share their stories, but suffice it to say that our talk in the hour after the reading helped me emerge from my isolation as a survivor of infant surgery without anesthesia and feel part of a greater community of people trying to come to terms with their own early medical experiences or those of family members. Many of us are still unraveling the meaning of these events in our lives. Writing has brought us together and for this, I am grateful. Truly, writing is a healing art.

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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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Reading Dr. Jill Bolte Taylor’s book, My Stroke of Insight, A Brain Scientist’s Personal Journey, is teaching me so much. At age thirty-seven, Jill suffered a massive stroke, and she shares her courageous experience of recovery in this wonderful book. As healing is the theme of my blog and as I’ve been healing and working to recover from a concussion and whiplash all summer, this story really speaks to me. Here are some of her thoughts as she experienced her stroke:

I felt so detached from my ability to move my body with any oomph that I truly believed I would never be able to get this collection of cells to perform again. Wasn’t it interesting that although I could not walk or talk, understand language, read or write, or even roll my body over, I knew that I was okay?  The now offline intellectual mind of my left hemisphere no longer inhibited my innate awareness that I was the miraculous power of life. I knew I was different now–but never once did my right mind indicate that I was “less than” what I had been before. I was simply a being of light radiating life into the world. Regardless of whether or not I had a body or brain that could connect me to the world of others, I saw myself as a cellular masterpiece. In the absence of my left hemisphere’s negative judgments I perceived myself as perfect, whole, and beautiful just the way I was (73-74).

This book is so uplifting!  What will truly awe you, however, is Jill’s TED presentation. I have watched this video no less than six times in the last two weeks. The information that she shares about the brain is so clear and the passion with which she delivers what she learned from the experience of having a stroke is so powerfully expressed, you will marvel, cry, and laugh. Jill brings us such gifts.  Take the time to receive them.

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I was surprised to discover that these photos were taken after my return home from the hospital, where I had an operation for pyloric stenosis that  saved my life at 26 days old. I always thought they were taken right after my birth before I got sick. How could I have thought that–a nice family photo taken between episodes of projectile vomiting?  My throw up, according to my mother, shot three feet through the air. And no matter what she did to care for me, I lost weight. She was frantic, trying to figure out what was wrong. She had no time to gather family for this event and dress up pretty. I could never have worn white, for gosh sake!

The date on this photo is August 17, 1952. Given that I was operated on July 26th and in the hospital for at least two weeks, I’m sure my stitches were still healing. On the photo album page on which this picture appears, I wrote: “Dad, Wayne, & Me day of christening”.  My father and mother, if you notice, are not beaming. In fact, neither smile, Dad’s forehead bunched into a thick bulge in the shape of a V and Mom’s face shadowed, eyes squinting and lips unsmiling. Maybe the sun was in their eyes, but that doesn’t prevent my Aunt Helen from smiling in the last  photo.

This next photo is a shot of my father, Wayne (my brother), and me. This picture was taken before my brother was shipped out to Aunt Helen and Uncle Harold’s house for a couple of weeks so that my parents could better take care of me. My white dress reflects a lot of sunlight; I’m glowing!

Below is a photo of my godparents, Aunt Helen and Uncle Harold, and me, a photo in which my face is most clearly visible. My aunt is smiling true to form. She was a very comforting and accepting person. My Uncle Harold became my brother’s hero after he came home from their place. On this day of my christening, I must have been doing pretty well to be taken to Saint Luke’s Episcopal Church in Union, New Jersey for a ceremony. That or they figured they better have me christened ASAP just in case I didn’t make it.  😉

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Thank you English 1A Composition students at the College of Alameda for reading and commenting on my blog. It was wonderful to get to know you better through your responses to my posts and our discussions in class. I am looking forward to reading the essays that you wrote in response to a medical humanities topic. And to everyone else reading this post, here’s the assignment fyi:

Directions: Write a personal narrative essay on one of the following topics:

1. What lesson have you learned from a wound or a scar of your own?

2. What has a medical condition that you live with taught you about life?

3. In taking care of someone who was or is ill, what have you learned about yourself?

4. What lesson did you learn from a hospitalization (yours or someone else’s)?

5. What lesson did you learn from a medical procedure performed on you?

6. What health challenge have you overcome?  To what do you attribute your triumph?

7. What has the death of a loved one taught you about yourself and about life?

8. How did an experience with a doctor change your life for better or for worse?

Note: You may include a drawing as part of your essay. If you do, discuss it in the body of the essay.

Recently, a friend asked me to email him the titles of the readings included in the unit that I teach on Medical Humanities. I started to compose it but realized it might be something you all might want to know about, too. Here goes:

1. “Beauty: When the Other Dancer is the Self” by Alice Walker, a beautifully written autobiographical essay about her struggle to accept and love herself in the aftermath of her brother blinding her in one eye as a child when he shot her with a BB gun.

2. My Grandfather’s Blessings by Rachel Naomi Remen, a book of profound, personal stories about being a doctor; coping with her own illness, Crohn’s Disease; and healing on all levels.

3. The Power of Now by Eckhart Tolle, a book about the joy, love, and peace to be had through living more completely in the present moment.

4. myincision.wordpress.com by me, a blog that chronicles my healing from the negative effects of infant surgery without anesthesia, informs the public about related issues, inspires through words and original artwork, and  creates a community of people interested in transformation.

5. “The Story of Shia” (<http://www.youtube.com/watch?v=JPhIRa-zDmI&feature=related>) narrated by Dr. Wayne Dyer, in which a differently-abled young boy inspires a team of kids playing baseball to be a living example of “God’s perfection”—an expression of our inherent goodness.

6. “Fiesta, 1980” by Junot Diaz, a short story in the book Drown, in which a young boy experiences physical symptoms most likely caused by the emotional distress resulting from family dysfunction.

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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.
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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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