Posts Tagged ‘sick’

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Starting out three months too soon,

He didn’t make it.

My twin was too little,

I took the nutrition,

This you’ll hear, is my rendition.

Left alone, parents aside.

Only touched out of necessity,

Rarely for love comfort,each time much brevity.

Fed through my head because I couldn’t feed.

A little weird, I think, because apparently I managed my needs:

In the womb, next to my brother,

The moment we’re out I don’t get another

Moment near him as they swooped him away,

Or fell into the bucket, there’s none who will say.

None who can or will tell me the truth as I stare off into space,

Appearing aloof.

Bitterness abounds as my family breaks apart.

It was at my birth, at my start.

Sure there were problems and problems before,

I can’t help but think I added to the stress more.

Regardless, I was an innocent life,

Quite fragile, delicate, and constantly under the knife.

They thought I was stupid, young, naive.

I knew what was going on, always protecting my reality,

Not wanting to believe,

That my parents couldn’t love me,

That they constantly grieve,

The three children they had

1 dead

1 dying

and the last, keeps trying.

That’s me, the last, a bundle of unknowns,

I stepped away to grow up on my own.

From a very young age I never connected,

They blamed birth, the brain bleed, always something indirect.

They never stepped up, they never confessed,

That all this, all this came from distress.

If they were dead, this life might make sense.

At the very least, I would have evidence, and my world not as dense.

I despise them, I pity them,

For parents they are not.

I used to want to leave, ran away a lot.

No one helped me as I sat in despair.

I was the crazy one, life perfectly unfair.

I was judged, ridiculed, abused all the time,

When I asked for help and spoke the truth, it was as if I did the crime.

I didn’t, I was just a little kid,

Shouldn’t have to take care of myself,

Yet I did.

This pattern created a grown up too soon,

From the age of 6 I was off, zoom zoom.

I began to rebel, only from them,

I began to stay away, always sent to my room.

The monster within me wouldn’t leave,

As I destroyed my things, myself, all in a vain attempt to grieve.

For not having a mommy to cuddle with when I was upset,

Not having a daddy as he was filled with his own, deep-seated regret.

I did have Barbara, emotionally and completely destroyed.

I did have Ken, an unstable adult child, who I sometimes enjoyed.

Then there’s Michael, who never really liked me,

He noted this before and to the police I was crazy,

And last from my childhood was Judi, far from a lady.

I yearned to connect, to please have a family,

No, not for me,

That would be uncanny.

As my world unraveled, I followed suit,

How did I not die on this treacherous pursuit?

I was done, ready to die,

What kind of life is this, all alone, with no one nearby.

Somehow I’ve lived, they call it fortuitous,

They call it a miracle, they call it bliss.

I don’t know what to say,

I just don’t want to struggle, through this, day after day.

I want to live, to stay alive,

Yet there’s uncertainty and death has been near,

The angels called for me, and I was like a deer,

Caught in the headlights, unsure how to proceed,

As the angels waited nearby,

Would I concede?

I didn’t go, not wanting to die alone,

But I was ready, done with the drone,

Of being sick, unloved and unwanted,

The only hope I had left, slowly dissipating,

My life was on the edge as I was done fighting,

Too scared to die, too tired to live,

I drifted through the night, unable to give.

I woke in the morning, rather confused,

The medicine finally worked, I didn’t lose.

I was alive, albeit tired, weak and meek,

Wanting to finish school, week after week.

I loved where I lived, not wanting to leave,

Yet I had to, this time,

If I wanted to breathe.

Life is breath,

Breath is life,

I must remember this pattern to be rid of the strife.

I’m alive now, I’m writing this down,

Missing Denmark, my twin, and my upside-down frown.

I was happy there, though I was sick.

I had friends, ones I could pick.

I’m lost here, where I don’t belong,

I’ve nothing here, not even a mom.

I have me, only me, someone I despise,

Who stole from a baby, ripped apart a family,

All by being alive.

 

 

 

What did I do wrong

What happened to my life? I started to get better over here, at least emotionally. I was welcomed by a most amazing host family, and felt a part of their home within the first 24 hours. We had ups and downs, mostly ups and downs were external forces for the next four months. We shared secrets. Then I got sick. They visited me every few days in hospital. Then I got well. Then I got sick after the first day, and was re-admitted. Fortunately, I was discharged days later after fighting a severe infection.

I moved out of the house as planned, to start another term. They had already planned on having family friends move in, before I decided I’d stay the whole year. Ever since that point, I have made the effort to go see them on at least half a dozen separate occasions, on public transportation mind you, while they own a car. They said they’d visit me and never once made the effort to do so.

Graciously they lent me their extra bike for the term. My youngest host sister and I have begun to exchange daily texts. The one I received from her today was odd. She had just asked if I was going to be coming by to see them before I leave and I wrote that I have to see her so yeah.

She responded in a rather adult way saying I have to confirm because I have the bike. The bike. Not me. Why see me? Why make an effort to come out to see me? I have not once seen them even attempt to come to where I live. Never mind the fact that finals, packing, and reverse culture shock are looming. Never mind I’ve been in hospital six times in the last four months. It’s always about monetary value, not people. People don’t matter. I don’t matter.

This is a mere extension or reflection of what I’ve been feeling over the past few weeks. Being neglected at the hospital that seemed to be the only decent one left here (I’ve been to four in this country), literally the hospital doing nothing but observation after I found blood in my tube.

The friends I’ve made where I live suddenly became absent from my life a few weeks ago as well. One, he was going through some stuff and wouldn’t let anyone in. He wasn’t responding to any of my texts and had very little contact with anyone. The other, I’m guessing it was his girlfriend who has been occupying his time over the past weeks. I just found out about the girlfriend over the past weekend at a gathering for a friend’s party.

The person who organized the party is at the same level of friendship as the person who the party was for. I hope this makes enough sense to get across. My birthday also was a few weeks ago, the organizer (friend) said we’d do something for my birthday. That never happened.I went to this party not bitterly, attempting to celebrate the special occasion for the friend. It was hard to not feel slightly jealous.

The cycle of neglect and abandonment and utter devastation surface and replay. Broken promises, broken heart, no family.

My father who only has contact with me for financial reasons as he has no emotional availability for me in his life just sent two horrifyingly nasty e-mails to my home school. You see, my home school is attempting to charge me their tuition even though I’m abroad and received a significant discount on tuition. If I don’t pay, they won’t give me my grades, will de-register me from classes in the Fall, and yes even remove my ability to check out library books. The money they want me to give them was to be my housing money for the summer. Hello homelessness, goodbye life as I knew it, for those few amazing months.

I thought I could do it. I thought it wouldn’t matter since I’ve spent plenty of time alone in the past. The problem or difference is that usually, I find ways to numb myself to the pain of being alone. This time, I haven’t done that. I become depressed and in a state of despair when alone. I’m just speculating here that the reason I do can be attributed to a long history of abuse and neglect. Constantly on my mind is the fact that my biological family is not present for me in any form. Tonight seems exceptionally hard. Instead of inducing harm or numbing myself tonight, I think it’s time I convey my message in words.

According to ongoing recent research, people who have a history of severe attachment problems tend not to do well in life. I’m sick of my disconnect from the world. I want to immerse into the world, not hide from it. A pit of despair formed in me throughout the day. A telltale sign that I’m starting to feel unwell is when I seek out triggering videos. For the past few weeks (or months?), I’ve been watching these sorts of videos or clips online.

Tonight, I needed to cry, and I’m watching something that’s fulfilling that need well. Yet, it began to hit home in how relevant it was to my current situation and I began to think. My thoughts just take off to the moon once prompted. I was reminded of how I don’t have a family, how I have no relationship with even the one person I want to-my brother. He’s sick, physically sick. It’s been an emotional roller coaster for over 20 years for everyone. He believes I’m sick, except that it’s serious mental illness.

The places I’ve been in treat people like animals. After a while people will embody the aspect that they are treated as. I’ve acted like an animal in the past. My brother has no wish to see that I am no longer that person. I feel a bit crazy tonight, but hey, I’m starting to think that’s actually something many people experience. It’s only when it becomes chronic that maybe it can have an attribution to mental illness. I’m not mental, I’m in the process of repairing my insane past. It doesn’t have to define me. My history will not defeat me tonight.

 

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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.

 

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?