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.
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.