Posts Tagged ‘NICU’

The larynx is responsible for the voice which is located in a region most people would consider the throat. So I guess technically, this wasn’t my throat, yet this was the first word that popped into my mind tonight as I was speaking with my Somatic Experiencing Therapist. She asked for sensations that arose when I made contact with my throat and instead of sensations, I gave her words. After all, that was the first thing that came into my mind.

Tonight however, my “throat” and me were two separate entities for lack of a more accurate depiction. My throat spoke to me and I spoke back.

Lately, I’ve been having problems with my esophageal spasms (Jackhammer Esophageal type). If I didn’t already have an eating disorder, this would be a great way to propagate one. I can see now that it stems back from long before I was able to form memories. for this time period, all I have to reference are medical charts from my home for the first two months of life, A.K.A., the Neonatal Intensive Care Unit at New York Hospital.

I read in the charts that there were times when at the doctor’s direction, feedings were discontinued for me, sometimes for more than one day.

This leads me to believe that this is where I learned a pattern, namely the pattern of defeat and then to reset/rebound/get back to baseline again. I was going to be all corny and write, “get back on my feet, no pun intended”, but then there would be a pun, and oh look I did that anyway.

It’s a matter of resilience and what people do when confronted with a difficult situation. And it’s true, you never really know how you’ll react or cope until something comes your way. For me, the pattern seems to be that even at the worst of times, when negative circumstances arise, I tend to have a decent ability to sit in my shit, and then come out from it stronger in the end.

For an excellent understanding of resilience, if you enjoy TED talks, check out Brene Brown and resiliency. I don’t know how to make the fancy accents on the 2nd “e” in her name, but I’m sure it’ll pop up… or click here for easy access:

However, this is not a pattern I want to continue. I don’t like that a negative circumstance is what I need to live positively and more strongly if you will. I want to have a fighting spirit without the constant reminders in the form of some traumatic or challenging situation.

Back to the topic at hand-conversations with my throat. I had my hand placed on my throat during this conversation:

Throat (imagine a person slumped over in a chair, this is how my throat is acting, not literally, just defeated): Why should I work now? You’ve neglected me for so long.

Me: Yeah, but it was hard-wired for me to do so from a very young age. No one took care of me, they ignored me. It became a pattern, habitual

Throat: Yeah, but what about now, now you have control.

Me: I know I do, I can’t describe it better than I was hardwired to not feed myself.

Somatic therapist interjects: I prefer to think of it as “conditioned”. You were conditioned to do this, not something that can’t be changed.

Me: Oh yeah, sorry, forgot that word. Hard when learning a new language to remember words in other languages (I’m learning Danish). Then I relayed this information to my throat.

Throat: (scoffs)

Me: I’m not really sure what more to tell it, because it has a point.

Therapist: try just sensing it.

Me: Ok.

Throat: You know, you abused me, you treated me badly.

Me: What? I may have an eating disorder, but I never have purged. How could I have treated you badly?

Throat: You may have not purged, but c’mon, I’m connected to your whole body.

Therapist: You know your throat has a point, do you agree?

Me: Oh yeah, absolutely (not sarcasm).

Therapist: So can you sense anything changing in your throat?

Me: I reached for my drink to test.

Therapist: No I want you to just feel it.

Me: A sudden burst of energy-Upon doing this, my feet began bouncing up and down nonstop for minutes, I probably would have run a mile if I were standing considering the speed and duration of my movement.

(Many minutes later)

Throat: I need (therapist). She’s got skills.

Therapist (chuckles): Lots of people have skills. You just need a person.

Me: Yeah, but my throat knows that you can help it.

Therapist: How does it know that?

Me: Because you helped other parts in the past and my throat was witness to that. Like remember the time we had a session and you said normally you don’t go that fast with your clients but my body was in crisis? First, you put your hands on my kidneys and then you moved to my left side and said there was a lot of heat in my stomach region. Then, it was kind of like a volcano after some time and began spewing out (the negative energy). Then you moved to my neck and the upper part of my chest, but you didn’t get to my throat that day. My throat felt neglected, forgotten.

My throat became more neutral, which was better than the initial distant teenager feeling it first emoted. Hoping that I can learn to listen to my body and we can work together more often than constantly fight with one another (physical symptoms manifesting as a way to express that something’s not ok).

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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?