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Mark Man – Where Scars Come From

 

Enjoy this piece by Michael Greilsheimer and celebrate his courage. He was born with jejunal atresia, a birth defect that led to an intestinal blockage and required surgery in order to save his life. (Click the link at the end of this post to read more about his life and how he copes with this condition.) His story below shows how creative children are and how important it is that they understand the truth about their early scars and experiences. 

MARK MAN

I had surgery on the 1st day of my life. I was ignorant to the medical myth babies don’t feel pain and a whole lot of other things back then. Scars were something I always had. I never knew a time when I didn’t. As a result of the surgery, I have a large horizontal scar on right side of my abdomen as well as a bullet hole looking scar on the left side of my abdomen and a scar on my forehead from tubes used during three-month hospital stay. I was told I almost died and was lucky to survive. I wanted more answers. They didn’t come for many more years till I did research on the Internet.

I was curious as a child why no one else I saw had scars like mine. I would feel insecure about it sometimes, not knowing really what to say or wanting to answer questions on what happened. Other
times it felt cool to have the scars. It was a sign I survived some serious stuff. Even if I really didn’t understand, I was still curious would seek more answers or thoughts on it.

I started to think different about scars or as I sometimes called them marks. Some would be temporary, like from sleeping or sitting on a chair. From this I came to the conclusion that there was a Mark Man, the same way there is a Tooth Fairy. So scars or marks must come from that. I would annoy my siblings when I saw that the Mark Man came. My family thought I had an imaginary friend. I didn’t. I never saw Mark Man. It was just how I decided that marks or scars came from as a kid.

For more info on my birth surgery/rare disease, click this link: https://www.rarediseaseday.org/stories/6109

                                        –Michael Greilsheimer 

 

      

 

4 Responses to Mark Man – Where Scars Come From

  1. Thanks Wendy, for linking with Michael and posting mention of his original story and then this piece. And what a story it is!
    Jejunal atresia is always a more troubling condition of infancy than the much more common pyloric stenosis you and I had, and Michael’s experience has surely been at the most troublesome end of the range. Sadly, with adhesions being a large problem for him, he’s perhaps not at the end of his pain and frustration. How thankful it makes me to have escaped this!
    For me it was also very touching to read of Michael’s ptsd, most likely also caused by his old-style surgery without regard to babies being affected by pain. And his mental games with his scar: I’m jealous of him there! How I wish I had his imagination and self-confidence!
    I have discovered several others who like you, me and Michael have written online about the effects of infant surgery on them. May posts of this kind continue to be written! They add variety and insight, and encouragement that none of us is unique or unusual in how we have struggled with the mist around our first surgery and its impact on us.

  2. So glad you enjoyed Michael’s story. He is an imaginative one, for sure. And yes, I too am jealous of him. I conjured up no such “Tooth Fairy” who came and made his/her “mark” on me. To my mind, my scar was always an ugly mark that separated me from ‘normal’ society. This feeling, I’m sure, had more to do with my mother’s way of handling it. Rather than refer negatively to my scar, I wished she’d remained silent. Maybe then, I might have come up with a cool “Mark Man” story. The pain Michael endured though is clear and I don’t wish any of us a need to come up with stories to explain the difficulty we faced as babies. And yes, I am happy that Michael has found a way to soothe the pain and find some comfort.
    May we continue to hear these stories that bolster our feeling of inclusion in society, for too often these types of stories just do not find sunlight; they remain buried deep in the individual, often causing a subterranean pain that undermines their lives. When we read these narratives, we can feel part of a warrior band of fighters who survived despite the odds. And we can feel compassion for our trials and for the fates of those who did not make it.
    Until I was fifty, I always felt an ambivalence about being alive. Maybe it was better that I had been ‘taken’, that I had died, for the isolation, depression, and lack of confidence I experienced were puzzling and painful. Now though, I’m more of the warrior mindset, glad I made it and can share some of my experience with others and meet people who’ve suffered similarly. We–a welcome pronoun. I am isolated no more, part of the tribe of Michael and Fred.

  3. Hi Wendy,

    I am so glad to have found a place like this and only regret I am coming to it so late. Your stories and those that are commenting with similar experiences are empowering as they represent a connection to my own.

    I have have a patch work of scars since I was three months old but they were hidden to the outside world under my hair. I have three huge white horse shoe shaped scars on the right side of my head a a host of of small crater-like scars clustered on the top right rear of my head that I have hated every day of my life even though nobody could see them. I knew they were there and they made me feel freakish. And I knew as a male that one day thinning hair would reveal them and literally dreaded this all the way through childhood and early adulthood. And then at age five I had a follow up surgery that involved an incision on the right side of my neck and a small one on my abdomen. The neck scar was very vivid and impossible to hide and the abdominal one was visible if shirtless at a pool or the like. Unlike typical boys that may revel in battle scars and the like, I hated mine because I couldn’t understand the causes nor did anyone else my age. I got so tired of explaining what I couldn’t explain that I made up my own story which was nowhere near as innocent as Mark Man. I finally started telling other kids that I was sliced open by an ax or a knife which disarmed those that asked and which, looking back, was a sad, desperate, futile, naive attempt at fake glory that I thought someone might understand and relate to more than a physiological disorder about cerebrospinal fluid.
    Your comment about being ambivalent about being alive strikes a similar chord with me. Until finding infant trauma treatment, I have never felt physically connected to my body or to the world. But slowly the impact of these surgeries is starting to make sense, I am starting to embrace a valid sense of victimization and a willingness to come out of hiding about the scars and the reasons they are there.
    I so hope a world of connection is forming for those of us in this unique circumstance and that trauma treatment for preverbal infant surgery becomes legitimized. At the least, I can confidently identify now as PTSD and that the horrors of six brain surgeries and the existence of scattered pieces of hardware lingering permanently in my brain and the total lack of understanding of the impact of this from neurosurgeons to therapists are something I can begin to deal with from a position of knowledge, perspective and maybe some day strength.
    Thanks again for this profoundly important blog.

    Bill

  4. Hi Bill, Just wrote you a long reply which disappeared just as I was finishing the last sentence. Argh! Whenever I think of letting go of posting, I think of you and all the incredible connections I’ve made over these ten years. I used to post weekly but I know it’s important to keep connecting and posting though I write less frequently. That we are a we is key. That via this post, there’s you, me and Fred, a little tribe. (When you think of it, there’s so very many of us.)The story that you shared above is amazing–the struggle you had as a male and your narrative not fitting in. The pain of inventing the ax story. The absolute lostness that so many of have felt, for we never had anyone to explain our scars and to integrate us into society. We never had anyone to make sense of it and help us heal. We had to go it alone. And that’s why our togetherness now is key. May the strength that you are sensing come sooner than expected. May you keep finding compassion for yourself now that you are realizing what happened. I know that just reminding myself of my vulnerability as a baby and how death had me in her mouth as an infant helps me forgive myself for still struggling to be in my body, for still feeling separate from my body in many ways. Thanks for writing, Wendy

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