Posts Tagged ‘diseases’

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?

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This is not some story about self-pity; it’s about my realization of why I rarely take my own feelings into account. This thinking developed over many talks with professionals essentially ending up in realizing that I don’t practice what I don’t preach.

The title of the blog evolved out of my current studies in science. I am attending a school where I am fortunate to be given the chance to design my major. Being that I already have an AA’s in Psych. and Liberal Studies, I didn’t want to put these to waste so-to-speak. I am also interested in Psychology; I decided to not pursue the field because to be blunt, I didn’t want to be amongst classmates who were constantly trying to work out their own psychological conflicts through their education (it’s a lot of people believe it or not). I have wanted to be a doctor from as young as I could remember, about 6 years old. Why then? I recently realized that at that age is essentially when I got the “good to go, nothing better, nothing worse” checkup. This also happened to be on the same day that my brother developed signs and symptoms of a completely unrelated neurological condition. I was as “fixed” as I was going to be at that point. I didn’t see myself as becoming a doctor though, because negative messages were conveyed to me from people who were in my life the most-mother and step-father.

I decided to give it one last go at one more school (I’ve attended 6 other institutions of higher education). My self-designed major investigates the mind, body, and spirit. I  study areas from psychology, pre-med. requirements, and spirituality/religious studies. Why? In its truest sense, this embodies holistic medicine, or “whole person” care. I am hesitant to use the word “holistic” because nowadays, it is often tainted and only recognizes Eastern medicine practices. Though that is one component of holistic medicine, Western medicinal practices are also incorporated.Finally, in understanding spirituality and religious practices, and self-motivation and habits psyche of humans, I learn more about  “why we do what we do”.

I have written this post over a period of several days. Initially, I was at ends with life, teetering on the edge, as I seem to do often. The essence of this post is to relay why I feel the way I feel. Two examples come to mind:

1. After my brother’s first major surgery, which caused him to lose hearing in his left ear, I was told to sit on the other side of the car. Traditionally, “my spot” was against the window on the left side of the car, my cozy corner. Upon being told abruptly one that I had to move (I was 8 or so), I was rather upset. My mother couldn’t understand why I was making such a huge deal out of this, acted like I had no compassion for my brother. Mind you, she was absolutely taking his physical state under consideration, while my emotional well-being was absolutely invalidated.

2.  During a very recent phone discussion about Thanksgiving with my father, we discussed my disdain for the holiday beginning at a young age with the announcement of his and my mother’s impending separation being on Thanksgiving at the age of 3, while watching the parade. I presume they picked this day to tell us because neither had work. This is only one of the reasons, however my father said, “You should be happy.” I replied, “Why?” HIs response, “Because then you wouldn’t be happy…” I asked him what he meant by this. Instead of “You’d hear the fighting, see the hatred, any regular answer, he explained, “If I wasn’t happy, you wouldn’t be happy.” How awkward… he still continued on with his life, and second marriage was to one of the most abusive people I have ever met. Who did she direct every kind of abuse towards? Yep, you’re reading that person’s writing. So yeah, I wasn’t happy anyway.

This is why I understand that though I am matter, I don’t matter, at least not to those who were supposed to care for me and protect me. I am currently working on self-worth, and validating myself. Self-care is at the core of it all.