Posts Tagged ‘NF2’

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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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You twisted fucks. You attempted to raise my guilt levels and ultimately succeeded in doing so. I was about to utilize my travel break to travel to a nine hour time zone difference and back within four days to visit my “ailing brother”. I don’t know how ailing you can be when you continue to compose jackass e-mail messages from your bedside.

I’m fucking sick and tired of being everyone’s punching bag. Enough is enough. Don’t just contact me when you need to blow a load and transfer your insanity to me. I’m fucking done with you bastards, you good-for-nothing imbeciles. Leave me alone you crazed bullies. Don’t attempt to twist my fate and my reality yet again.

You ill people continue to use me as the scapegoat so you don’t have to look at your own damn problems. Well it’s time you take a good hard look and stop fucking with my life. The moment I try to do as you say, to contact him, to communicate with him, you say, “Did you actually expect him to jump for joy when he finally heard from you?” Well maybe not jump, but judging from other people’s messages, I figured it would at least do some good.

I’m not going to sit around and pretend like nothing happened. I don’t care how sick someone is, no one and I mean no one has the right to be an evil pompous prick as he has been displaying. Fuck, I can’t even put into words how damn angry I am for falling for the trick, for allowing you to mess up my brain, yet again.

Family, what fucking family do I have? All this incident has shown me is how unhealthy and irrational all you people are and how honestly, I wish you were all dead.

It’d be a lot easier to justify not having a family if everyone was deceased. Instead, I get to look at reminders of how dysfunctional you all are and how you all hold Adam on a pedestal and how the crown prince of Neurofibromatosis Type II continues to be the diamond of everyone’s eye. I know you will likely never see his faults, and you will constantly put your hurts and fear and horrid feelings onto me. I am being who in your mind doesn’t matter and is so fucking ill. I went through unnecessary and dangerous testing because you believed I was at fault. I was sectioned off from society for years. And for what and why? Because you thick people can’t bear to think that you do anything wrong. It’s not all on me. I wish you’d show me the compassion and love I deserve. Since that won’t happen, I will continue to displace myself, and struggle on my own. Struggling on my own is better than being terrorized by you.

You know why this sucks? It’s dormant, one day I think I’m good, enjoyed one day, and the next day, out of nowhere it attacks It messes with my mind, at least dysthymic depressed people can expect, can predict that the day likely won’t be grat if their depression is untreated.

Meds. don’t help for me, they actually make things worse. It’s called Bipolar Type 3 which is NOT bipolar, but the DSM has no way to classify as of now. Essentially, it’s that antidepressants actually make things worse, actually having an adverse or no effect from taking them. Psych. meds. are the only meds. that have no long-term evidence of efficacy, and psychiatry is the only doctor-directed field that exists nowadays.

Consistency form day to today is taken for granted by most people. I would love to know that when I feel good, it will last. I understand that it can’t be permanent, I just wish more “good” days or even times existed.

My analogy for situational depression:it’s like prey sneaking up on you in the savannahs picture Simba in Lion King when he was learning to hunt.

A friend’s analogy for this disorder; it’s like a python wrapping around you, until you have no breath to live and cease to exist. Fitting, particularly when intertwined with an eating disorder.

I was thinking about how things have become quite impersonal. Often, texting is seen as impersonal, conversations are done electronically and the value of human contact has disappeared.

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With the disease my brother has, texting or e-mail is all we have. He hasn’t learned enough sign language to communicate through a medium such as Skype. Most likely, his hearing will only decline. He’s about 90% deaf. 50% can not be restored, at least with the medical advancements that currently exist. You can’t fix auditory nerves that were ruined when removing a tumor. Because of NF2, the impersonal nature of texting has to exist because I can’t talk to my brother in another way.

I mentioned to him that specific vegetarian and vegan diets has been shown to slow tumor progression. He thanked me, he had no clue. Seriously? Health 101 people. Interesting and surprising that Barbara never mentioned to him that diet was an option, as she seeks out any sort of treatment for his disease day after day. When I told K that he’s super skinny, and that this has been attributed to the disease, K said, “or not” (referring to the possibility of an eating disorder). Hmmm. See this is why doctors ought to practice comprehensively. This is why I’ll become a doctor an provide what I believe to be the best possible route for the patients.

Ironic as all else that we both have not only neurological disorders,  but central nervous system ones at that. And Barbara (contributing to 1/2 of our chromosomes wanted to be a neurophysiologist since the age of 9 and didn’t pursue that path.

It’s my birthday today, and apparently calls are just considered an inconvenience. It’s days like this I’m reminded that I really don’t have a family willing to take time to appreciate me. Honestly, it’s just an arbitrary day that is indicative of our place in the universe at one moment which can be represented by a calendar day every 365.25 days. Wordy, yes. I don’t mind.

I kind of wish I were back in elementary school, bringing cupcakes for the class, when even if the world was crumbling around me, at least one day existed where I was the focus of people’s attention, and for one day, I mattered.

 

 

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?