Posts Tagged ‘identified patient’

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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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Fuck fuck fuckity fuck. Tharnks, Rockstar Ronan’s mom Maya for making that an awesome phrase to use, fitting of many situations.

I got off the phone with B, and was finally able to clarify what she had said the other week about a double relationship with K. Well, that was odd, because I found out that her double relationship as she sees it really isn’t a big deal, rather consists of half of the session being therapeutic and the other half catching up on K’s life, talking about life as if they were regular people. However, B brought to my attention that even though K doesn’t want her sharing with anyone (of course B told me- who knows maybe she’s trying to stir up my emotions, evoke a bit of jealousy to feel as though she has something I can’t or don’t have).

When I had asked B about where they’d have lunch, B wasn’t sure but then said house or park. Didn’t K tell me just the other week that it was a bad move to go to B’s house on the day she was fired? Didn’t she regret that? Obviously not, or I guess regrets die quickly.

I watched baby videos today and yesterday. As a baby I had no reactions to when Barbara was touching me, and it makes sense now.

Friday sucked though, First, I wake up to an e-mail that someone at our school died early this morning, cause of death, unknown at this time (I suspect suicide). Then, I go to an intake at an Intensive Outpatient Program (IOP) for eating disorders.

I was first greeted outdoors by an unkempt man, only to be brought into the office and greeted by a lady who was so thin, I could absolutely imagine what her skeleton looked like. Next, the intake coordinator who is also the owner I believe, was totally impersonal and I felt really awkward around him. He put his hand out for me to shake and I REALLY didn’t want to and avoided it, and he kept it out until I shook it, and he shook it far too long and I felt contaminated after the shake that I didn’t want to give in the first place. Even today, it’s giving me the heeby jeebies just thinking about it and I feel dirty. 

I didn’t make eye contact with him. He wanted me to open up immediately about certain things. Here’s how the intake went:

Me: “just because you closed the door and have letters behind your name doesn’t mean I’m going to spill my life to you…. especially the first time we meet.”

Guy was an asshole and asked me to put my phone away even though I wasn’t doing anything on it. I just need to constantly fidget, thank you ADHD

Me: You don’t even know what I’m doing on it.

Asshole creep: What are you doing on it?

Me: That’s not something that’s any of your business. (The guy evidently had a complex and felt the need for power and control, made apparent especially when 2:00 came around and he said he had someone else to see and refused to answer my question.)

Me: So are you going to “allow” me to come here?

Asshole creep: I’m not sure this is the right place for you. I think you need someplace that has a more psychiatric component. I have a 2:00 appointment now.

Me: Really it’s a simple question with a simple answer. You’re judging my case by what  you’re reading on a paper and hearing from me, even though I’m telling you most of my treatments were mistakes and forced upon me as the Identified Patient. So, what are you going to do?

Asshole creep: I’m going to call so and so to see if there’s a more appropriate place for you and then call you. Sorry it didn’t work out (totally unsympathetically).

Me: Oh, well thanks, I’m used to it…  walked out.

Asshole creep deemed my case too complex.  He was bizarre, thought that I need more psychiatric level of care, didn’t look at the big picture like only two people have throughout my various treatments. It takes a special individual.

 

Then I saw K and that was horrible from the get go. I was devoid of emotion. I finally asked her why she didn’t respond to my text earlier this week:

“I’ve tried to do something about disconnection and nothing’s working. I’m really detached and idk why or what to do about it.”

K: I didn’t know what to say. It wasn’t specific enough, I thought “oh, thanks for letting me know”.

I started to get heated, thinking that no one really does understand me and no one ever will. K and I went in circles about how I logically know that I don’t have a family, I read Adam’s text to her (the one when he told me I’m not part of the family) I told her about the student’s passing.

K: How do you feel about all that? (nice, typical therapist response/question-I’m smirking internally)

Me: I don’t feel a thing about it, I don’t feel anything. 

She kept repeating that she doesn’t know how to help me in this way and that, and I kept saying

Me: I need support. 

K: What does that look like?You need to specify

You damn well know B didn’t ask K to have lunches with her. K simply rescued her, and apparently won’t rescue me.

K: What you want is unreasonable and you can’t expect everything to work out the way you want it to and for support to be there the way you want it. It doesn’t exist. There isn’t someone like that to fulfill what you want.

Me: Oh, ok (in sarcastic tone). It seems hypocritical because other people get it, and I just need support.

K: What does that look like?

Me:  I don’t know because I’ve never truly been given it.

K: Well ok, that makes sense. It’s because you don’t let people in.

Me: That’s because when I do let people in, they let me down.

K: That’s because you try to find excuses for why people aren’t good enough for you.

Me: I’m confused because for the longest time I would constantly go back to my family thinking they were good for me and I was the problem and then I finally realized that wasn’t the case and went away from them. 

K: You pick out people’s faults and then shut them out, like it gives you a reason to not connect or something.

Me: That’s not true. I know that my advisor has faults and I still like her. There’s plenty of people who I may have done that to, but not everyone (as she was insinuating).

I kept saying I needed support and was confused because it seems hypocritical to say one thing and do another (as is the case with her and B and how she’s about to have lunch with her everyday, though I didn’t mention it).

So why is K being a rescuer for B and not for me? She’s enabling her behaviors by going to have lunch with her the sicker she becomes.

K: You don’t need to have something drastic happen and be really sick to get the support you need.

Me: That’s not true, apparently I do because when others are, they get it.

K: Harshly, loudly, abruptly, she said, “Is all this about the B situation again?

I went into it. First I started staring, then my right hand began twitching and then I kept trying to fight off the seizure. K tried to get my focus and couldn’t. I knew everything going on, just couldn’t talk.

This was the first Psychogenic non-epileptic seizure (PNES A.K.A. NES)  I’ve had in well over 1.5 years. While trying to fight it off and not being able to talk, I realized that it really does stem from pre-verbal abuse. I couldn’t express myself as a baby, and I couldn’t talk at present moment.

K: Laura, Laura, Laura. If you won’t reply to me, I’m going to have to call someone to pick you up.

She said this a few times, and then grabbed her phone.

I tried to get my neurons reconnecting, anything to indicate that I heard her, and just couldn’t respond.

Well, she proved to me on a different level that getting sick does get one attention.This is not what I intended, this is just what happened for being in a heightened emotional state.

K: I can’t just leave you in this state. I’m going to have to call someone to pick you up.

I thought I knew what she meant, and I tried to get my neurons firing again to say no don’t summon an ambulance. I mean so many reasons revolve around that. I’d pay a butt load of money for something that’s not pre-authorized, and I’d probably know the people on the ambulance since I’ve done EMS work in that area. Plus, hardly any medical professional actually understands PNES.

I find it weird because I experience body sensations I can’t really describe. Speaking as someone who has suffered through long bouts of dissociation (months at a time), I’d say PNES’s are worse because I remember them and I feel a sensation that I can’t control and I can’t talk even though I’m fully aware of what’s going on.

Eventually I wrote notes on my phone to K and showed them to her. I stayed way past my original appointment time, and by the end was speaking broken, monotone, robotic-like sentences. At least the cloud of detachment lifted a little, almost like a fresh start to feel emotions. I put this shield up, and when having a slight seizure, the shield became a little less strong. This may be good, at least therapeutically for feeling emotions, even though it sucks to feel them.

K says it makes sense for that to have happened, especially if I haven’t been having emotion for nearly 2 years (I corrected that, saying it was only 1.5 years). She said it’s like I just push the emotions away immediately and then they get stuffed (like the teapot effect).

B called me as I was in K’s office. Earlier, I told her I’d be at her house around 4:30. She called me as I was fighting off the seizure and I wasn’t able to answer.

I did see B after K deemed me fit enough to drive. While hanging out with B, she asked me when my break would be, when would I be moving out there (for the summer). I told her mid-May and she tells me that  more lovely news. The house manager/owner of many sober livings told her I’m not to be living in her house come summer, and that I’d be living in the shitty house I lived at last summer and over winter break. This is the house with people significantly older than me, older people who are super unstable and a house manager who is constantly high on pain pills.

Um, no thanks! When was the owner going to tell me this? Probably never, pawned the task off onto B. 

Oh yeah, also it was my friend’s birthday earlier this week, missed it because I didn’t see her and found out that my group of friends I eat most meals with are going to celebrate tonight. I wasn’t invited. wtf? I really don’t have friends, the world is a cruel place.

Oh and I can’t get excited to study abroad because I have no guarantee that Ken will actually pull through and purchase my ticket, considering triple ex has constantly talked him out of things and he meshes with other’s personalities, instead of having an individual personality.

To sum up, I’m looking at another ED (eating disorder) program except I don’t think the timing works well on this one and I may not be able to go. K wants me to get the ED under control so we can work on things further like grieving.

Monday may suck… a lot. My step-aunt died nearly two years ago on the 8th and when calling my step dad (Michael) to say my condolences and saying I could come to the funeral, he told me pointedly that I wasn’t invited because I since I hadn’t been speaking to Barbara that would be hard and it was already hard enough. He talked to me like an animal just as he has done most of my life. I never felt true emotional connection with him, he’s a fake.

6 days later, I found out via Facebook that my best guy friend Morgan died on April 8. So both my aunt and he have the same death day.

K was talking about my need to grieve and then I said to her the grief isn’t so much an issue for my aunt as she and I weren’t close; it was merely the harsh response I got from Michael in regards to the funeral situation. With Morgan however, that’s a whole separate entity and I haven’t really had the chance to grieve like  should, because I’ve never really grieved anything.

She suggested that I do something in memory of Morgan, asked me what he and I used to do. We’d drive to places without a destination in mind, we’d watch movies until the wee hours of the morning, we walked the pier in Santa Monica. We hung out, we talked about anything and everything. Existential talks, I miss them. I miss Morgan. I did connect with someone, and that someone is no longer here. I get why I’m so disconnected, so detached.