Posts Tagged ‘premature birth’

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When I was six years old, I went to the neurologist. It was a simple check up and ended neutrally-nothing better, nothing worse. For all intensive purposes, it was a good day, a reason to celebrate. It was also the day I had to grow up immediately.

Following my check-up, my mom, step-dad, brother, and some aunts, uncles, and grandparents from my mom’s side went out to lunch. It was a boring lunch and my brother and I were the only kids present. As such, we sat next to one another, giggling at my brother’s finger.

For some reason, unbeknownst to our six and eight year old brains, his finger had begun shaking really fast. We laughed throughout the meal. By the end of the meal, his finger did not cease shaking and it was at that point he declared, “I think I’m gonna go tell Mom now”. I shrugged my shoulders and continued on with my meal, while observing my brother walk over to our mom, show his finger and see my mom’s happy face go frozen, almost like “into war” mode.

She made a call somehow (this was before cellphones were common to carry though she may have had one since she’s been on top of that technological advance) to a doctor. Little did I know it was my doctor. All of thirty minutes later, back we were in my doctor’s office, and my brother was seeing the doctor with our mom while my step-dad took me for a walk around the neighborhood. I remember glancing up at the trees in that neighborhood, it was a beautiful autumn day. The sun was shining through the trees, and to me it looked somewhat like this:

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During this walk, I remember thinking to myself, “Today is the day I have to grow up.” I don’t know how I knew this, I certainly didn’t know what this would entail, and yet I distinctly remember knowing today was going to begin a new way for me. Already being robbed of a “complete” childhood (free from worry or despair), I knew childhood was now a thing of the past.

Coming back from our walk, I found out that my brother was to be admitted to the hospital that day. It took two years for them to figure out what disease he was afflicted with. Neurofibromatosis Type II was the catalyst in completely tearing my family away from me.

Every time I complained about having Cerebral Palsy and how kids would make fun of me or how I couldn’t make the Junior Olympics in gymnastics because I wasn’t flexible enough or my legs not strong enough to perform certain maneuvers, I was invalidated by my parents. My dad always yelled at me to pick up my feet (my loud shuffling embarrassed him). He insisted I didn’t have Cerebral Palsy (CP). Barbara always told me to not complain, look at my brother, he has it worse. Yeah I suppose spending the first two months of my life in a hospital where I almost certainly lost my twin to premature labor and birth and having three major reconstructive surgeries before the age of 7 just wasn’t severe enough in her eyes. After all, we’re talking about the woman who had breast cancer and made no big deal of it because my brother and I both had incurable conditions and she knew hers had a cure.

If only it were that simple, to think oneself well. I want to think my brain damage will go away from her negligence of not seeking immediate medical attention when she began bleeding 3 MONTHS before her baby(s) was due. Whenever I had any sort of negative thought about my affliction with CP, I was told, “You don’t have CP, you have Spastic Diplegia”. What? I shrugged this off and it wasn’t until the internet became a common place to look up information that I realized that Spastic Diplegia is a form of CP. Really, who knew? Certainly not me…

Throughout my childhood, I formed the belief that my brother’s disease didn’t impact me and that I should be grateful I don’t have hundreds of tumors growing at will throughout my central nervous system. Thinking about it now I realize how irrational this train of thought is and how often my emotions were invalidated, how often I was invalidated.

I’ve been seeing a Somatic Experience Practitioner for a few months now (thanks to internet, I continue to have video sessions with her while I’m studying abroad). In our initial session she explained how the body stores trauma if there is no way to release it. She expanded upon this concept, explaining that we can react in 4 ways to trauma. 4? The conversation went as follows, with her asking me to list the ones I knew of:

Me: Fight, flight, freeze.

Her: There’s a fourth, can you guess what that is?

Me (very quietly with a smirk): Party?

Her: Nope

Me (again quietly): Dance?

Her (smiling): Closer… it is an action of sorts.

Me: (shoulders shrugging) I don’t know.

Her: Inquire. Ask why someone is doing something. However, kids don’t have the capacity to do this, they…

Me (interrupting her): No, no I did. One time I asked ______ (evil ex-step-mother) why I was abused and why ____ (brother) wasn’t. Evil ex-step-mother said it was because, “he’s too sick”.

The abuse I’ve endured, the hatred, and utter anger that has been projected unto me is something I’m able to understand now. The trouble doesn’t lie in my rationalizing this though because I believe there is no justifiable reason(s) people willingly choose to hurt a little kid. Back to basics for now though, at least to understanding defense mechanisms.

Defense mechanisms are often employed when a person’s capacity to cope is beyond his or her tool belt. There is no screwdriver to fit into the square peg, so what does one do? He or she tries another tool and another, until the tool that works is found. Sometimes it may not be the optimal tool, yet often at this point a person is overwhelmed and tired because finding the right tool is a difficult task. So, one takes what they have.

I think this analogy applies to the family dynamic I grew up in. Distancing myself from my family throughout the years, first physically, then emotionally, then pretty much all together, I have been provided with the chance to look inward and at the family dynamics, particularly while studying abroad.

The day before departing, I found out that my brother was to have surgery to remove a tumor from his brain stem in no more than four weeks from that date. There wasn’t much I could say or do as the only communication he and I have is the occasional text or e-mail. He’s essentially deaf and anything I relay to him immediately will be told to our mother who I have had no contact with in over 1.5 years after a messy ending. My brother and I are not close, and he sees me as crazy and not part of the family. I understand where he gets these thoughts from, though I must say I don’t agree with him. I simply responded to my environment the best I knew how to and my environment was not the model of Utopia, especially when it came to facing stress and dealing with emotions.

I recall at the point of my brother’s first hospital admission that Barbara lost a lot of weight and mentioned something about not being able to eat. Hmmm, wonder where the eating disorder evolved from (that’s a story for another time though, particularly because this is merely one of many factors that contributed to my animosity towards food).

You’d think it was clear that NF2 affected my life. My college application essay was entitled “My Brother’s Finger”. Barbara reviewed the essay as did some of my teachers. If I were asked even at that point if it affected me, I’d deny it, because denial and avoidance of emotions is what I’d become majestically acquainted with.

Fast-forward to present day and my first few weeks studying abroad. I wanted to prepare myself and have support if the outcome of my brother’s surgery was up in the air. During the time before and after his surgery, I somewhat relived my childhood and I began to unravel the intricacies of my past, one reminder at a time.

Prior to the surgery, I told my brother I couldn’t make it, wished him well and loved him. In an angry text to our dad, he wrote:

“I don’t know what you said to Laura, but she’s not coming to visit me. These games you play with your mentally ill daughter to get back at mom, have backfired and now have really hurt me, as well.”

I asked our dad to not mention anything about me being abroad, as it is my life, and they are not involved in my life and them knowing wouldn’t affect the situation in any way. He told me he wouldn’t tell and broke his word. He did leak that I was abroad and even then, it wasn’t believed by everyone. My cousin who I don’t often speak with messaged me on Facebook:

Yeah we heard your randomly in Denmark

 Pretty shitty timing to be going there knowing your brother was having a major surgery
 
And from the female person I am progeny of:
I don't know if you really are in Denmark 

Please remember if I have hurt you in the past it was NEVER intentional
And this lack of communication you are choosing hurts me to the core of my being

 

It’s like my childhood friend said, it’s like deciding between manslaughter and unintentional murder, end result is that someone’s still dead, intentional or not. I’m still hurt. From the male I am progeny of:

“I can’t make the two of u work anything out. U r being to cryptic and secretive to pass it off as just not lying. U r putting me in the middle of the crap your mother started which is not fair to me… U can be a bit more empathetic to ____ (brother) considering what he is going through…

And something I can’t post on here as it was on the phone was Ken screaming at me for how selfish I am after I told him “I wish you would have told me that you were going to tell him that I’m here before you did; it’s your opinion that it was going to make things better, and you didn’t respect my wishes.”

It’s things like this that I realize that all they all know how to do is blame me, use me as the sponge to absorb the mess that they’ve created. Yeah, we got dealt a pretty challenging hand of cards. Many people have shitty cards, and many people still manage to have happy families. There is no need for them to bash me and yell at me and torture me because they can’t deal with their own shit.

Yet, I constantly turn the negativity onto myself in the form of some negative behavior, and sometimes to other, never daring to hurt another lost child’s soul. I do believe I can and will heal, without my family. All I need is love, a healing touch, and a compassionate heart. Hopefully I learn to provide myself with that sooner than later. The darkness is seeping in again.

 

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All who would win joy, must share it; happiness was born a twin.  ~Lord Byron

I’ve always thought I was a twin; every time I mentioned it growing up, my parents would act as though I was being ridiculous and scoff or brush the thought aside. Fortunately, I landed in eating disorder treatment two and a half months ago. The outpatient setting and transitional living home I reside in is validating, more so than other places I’ve journeyed to in the past. It was at this place that I was referred to a somatic therapist about one month ago.

To think, it’s been only one month I’ve been seeing this amazing human being is beyond me. I had yet to cry in front of her though I have two session per week with her. Then, last Friday happened, and last Friday was quite an experience.

Quick note about somatic therapy: it’s when a therapist deals with bodily responses to trauma, and yes, we all hold trauma of some sort, it doesn’t have to be abuse, neglect or torture. The somatic therapist I see incorporates touch as she holds a massage therapist license as well.

The first session with her she didn’t touch me at all, she sensed energetically that my system was not ready to handle it. Gradually, she integrated touch, almost always starting with my kidneys/adrenals.

Last Friday, I mentioned to her that my eating disorder therapist believes I hold my trauma in my throat. I’ve been having many throat issues and have had to resort to a soft diet. We ended up on the topic of babies and suddenly, for the first time in her office, I realized I had to close my eyes. I hadn’t yet closed them in her presence because I never know what will happen if my eyes are closed, my safety feels compromised.

However I closed my eyes and put my hood on. Up to that point, I hadn’t worn a sweatshirt on the table. It is ideal for her to have closest access (without touching) to my skin. She asks me to take it off usually, and I obediently do, but not Friday thankfully. My hoodie is a security blanket and extremely soft.

Upon closing my eyes, I saw a baby. Have you ever gone to a museum where they outline the stages of a baby in-utero and you see a small object about the size of an egg surrounded by amniotic fluid? That’s what I saw. Then I thought to myself, “I thought I was a twin” and instantly I saw two of these fetuses, mirror image of one another.

As though I were looking through a kaleidoscope, the image in my mind remained, along with a slight beating or pulsation as though it was to a heartbeat or someone’s breathing (like the carrier of the babies). I saw the color yellow flood through me and then miniature babies, maybe 8 or 10 were in a kaleidoscope image circulating about in a circle, in various positions. 

The image then returned to the two babies, facing one another. One baby detached from the circle and began drifting off. I began to feel an overwhelming sadness. When the therapist asked me what was going on, I explained to her that the other baby was leaving, saying to me, “I’ll be waiting for you.” It wasn’t in a creepy way, just sincere and matter-of-factually.

Suddenly, there was a bright light and I was surrounded by about four sets of arms over me, and a mask on my face. At this point, the therapist had hand placement; one on my lower neck and one on my chest. My breathing was rapid. I told her I barely felt the presence of her hand on my chest and she began a sort of kneading motion with her knuckles, not harder so much as to bring awareness to my body.

I felt an extreme pressure on my chest, not from her and not from anxiety. It was the sort of pressure one would use to stimulate a baby upon birth (as an EMT, I am aware of this tactic). My breathing continued to be erratic, my left hand was tapping up and down on the table. She took her hand off my back and placed in beneath my left hand. I made no motion towards it. She asked me what I wanted to do with her hand. I said, “instinctively, I want to grasp it”. She asked why I didn’t, to which I replied, “because then that would mean I’m in this world. She said, “You are in this world.” I, as the baby speaking, said, “I made the wrong decision, I want to be with the other baby. She said, repeatedly, “You’re here, you chose to be here. I continued to reply that I didn’t want to be, I made the wrong decision. She asked me to decide if I was ready to have this happen, to be present, to let the other baby go. I wasn’t. Usually, she doesn’t push me into any sort of decisions, this day she did a bit it seemed.

We ended at the point of conflict; my choosing to be in this world though I don’t want to be. I badly want to be with the other baby. Not wanting me to think too much about it, she said to not rationalize what had just happened. I haven’t too much though I’ve thought about it most of the days since. Seeing her today, she said, “Happy 5 days since your birthday”.

A few sessions ago, she mentioned that my nervous system is like an infant’s and to my therapist at the center, she said it’s like a newborn’s. Even if my age progresses, if my emotions are never dealt with accordingly, age will remain inconsistent to my developmental state.

I saw my psychiatrist today, the first person to get intimate with my case, “a little too much” as she said in a joking manner. She said I have to consider my situation as though I’m an orphan. Even though I’ve thought that constantly, and said to a few people, this was the first time someone else brought this to my attention.She spent a lot of time with me, much appreciated.

Today, I arrived slightly late to session because my psychiatry appointment today was delayed, resulting in my delay in arriving to the somatic therapist’s office. She didn’t want to use the table today (where touch often takes place). She asked me to sit with being alone, to feel what it feels like to be alone. An overwhelming emotion flooded my body and a steel gate went down, and I went blank and unable to talk.

This has happened before, not in her presence though. She came over to me and put her hand on me. Later on, she explained to me that my cells froze and that was validating because then it was as if someone else was validating my experience, someone so gifted and knowledgeable and attuned to others’ bodies. Someone who won’t run away and enjoys a “complex” case.

Even though my individual therapist can’t handle me too much right now and is struggling through her own stuff, I’m very grateful she referred me to the somatic therapist. My experiences are finally feeling more real as opposed to surreal, and at least one other human being on this earth cares about me.

Someone cares about you, somewhere, somehow, even when you least expect it.

I’m starting to have almost chronic (daily) pain from my extreme tightness attributed to Cerebral Palsy.

I keep thinking about what the neurologist said a few weeks ago about how stress seizures are really common in people who have experienced pre-verbal abuse. To sum up, pre-verbal abuse, is abuse that occurs at an age before the child can speak. It makes sense though, considering I barely uttered a word until the age of three anyway.

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Growing up I was told that it was speculated that I developed CP as a newborn, probably a few days old. The story developed a bit as I grew older and could better conceptualize ideas. It was said to me that everyone (yes everyone) has clots throughout their body. The body is generally able to rid itself of these clots and there are no repercussions. Yet, since I was a preemie and came into the world at around 6 months, I was very tiny. Any clot that developed in my body could and most likely would be detrimental. That’s exactly what was speculated to have happened.

However, once my mother told me that she didn’t know I had CP until I was 1.5 years old, even though doctors said they mentioned it when I was a baby. It’s ok if you want to read that last sentence again, except no matter how I read it, or type it, it still doesn’t make sense to me.My dad has previously mentioned that doctors told him I COULD have a whole host of ailments, not that I did. I wonder if she’s confusing that with truth. No surprise there.

Might I mention that I went through my first two months of life and the concurring medical records for the first two months I was in the NICU. Every time something neurological was in the record, I paid special attention to it. I was given a battery of tests and had many many conditions charted in these records. I had a lot of diseases ranging from jaundice to severe hyaline,  membrane disease to apnea to bradycardia. You name it, I likely had it. The funny or ironic thing is that nowhere in these charts is there ANY indication of a neurological impairment.

I’m trying to play detective here and put pieces of the puzzle together. Yes, I know I over-analyze a lot of pieces of life a lot of the time. I doubt that will change. You don’t need to be Sherlock Holmes to figure this one out though. Look at this picture:

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Do you “see” any neurological issues here. Key word, “see”. A lot of babies have eyes that still need to play catch up with their brain A.K.A. one eye wanders, both eyes can’t focus on the same fixed point at the same time. This is common. Look at my eyes. There’s nothing abnormal there.

I’ve been told I was a handful as a baby (and many times thereafter). I cried often, barely slept. It makes sense for someone to have a sick baby and not want them around and try to hurt them. It also makes sense to have a caregiver get frustrated with a baby. I understand all of that. I’m not blaming anyone, probably because it would almost be Mission Impossible to find out exactly what happened 25 years ago.

Parents fighting all of the time. Annoying baby. Sick baby. Tired. Trying to do anything to make the crying stop. May have already taken it to lesser extremes in the past and resolved “issue” of finicky baby. Too late to go for a car ride to soothe baby. I don’t know, I’m just guessing in the dark here.

I’ve been looking at videos online of ways to improve the symptoms of Cerebral Palsy and am bothered because my mother seeks out every imaginable treatment for my brother and his condition (NF2-Neurofibromatosis Type 2). Why won’t she spend her time seeking treatments for me? My way of life could always be improved. After all, probably everyone’s could.

Maybe I developed CP from shaken baby syndrome, maybe I wasn’t. Either way, I’m still stuck with Cerebral Palsy and stuck looking at surgeries or advances or practices that could have improved my life had my parents sought out appropriate treatment for me as an infant. Why would you want to seek treatment for someone you didn’t want in the first place though?