Posts Tagged ‘Cerebral Palsy’

Today, I was confronted by someone I am living with who was upset over me having fruit in a plastic bag out. She began to recollect everything I am doing or rather have done that differs from other people in the house. She continuously repeated in a harsh and violent tone, “You’re not special”. I began to space out as she began to become monstrous as I do not care to hear from people that have nothing unintelligible to say.

Further, I began to think about why she continued to say this to me and what message she was attempting to convey. This is when it occurred to me; though I do not perceive myself as special, I do have special needs. There is a distinct difference. For me, those difference present themselves in the following ways:

  • I need more space in kitchen cabinets because the items I need for my motility disorder take up lots of space, and are very expensive. However, if the items are bought in bulk, the price is often quite lower. So, at the moment, I have many items from bulk shipments.
  • I take more time getting ready, and have to wake up earlier.
  • connecting this to an earlier post, I often am allowed additional baggage to lug aboard a plane. I don’t feel particularly special and rather isolated when I have to spend an additional 30 minutes to one hour waiting in airport security lugging a piece of baggage that is generally quite heavy, full of liquids because I can’t walk into a convenience or grocery store whenever I’m feeling hungry to be satiated. These items are not carried in your everyday store.
  • I have to be very wary that the food I grind is pureed to be of a particular consistency so I can swallow easier. Preparing food to this standard takes at least two to three times as long as an average meal preparation.
  • I have to drink out of a very particular cup with a straw, and these cups are generally made for people aged 1-3 years old. Oh how I love carrying around a cup that is targeted to this age group. If I want to be identified, a bright green cup is sure the way to go. I hate this fact, and often don’t consume any liquids while I am in public view to ward off any chastising before it starts.
  • When I go places with friends, it isn’t uncommon for me to be left behind so they can do what they need to do in a set time frame-I walk too slowly for them. Once this occurs in a friendship, aside from a truly valid reason, I often do not consider most of these individuals friends thereafter.

Someone who is special tends to believe that others should conform to his or her own standards and often exhibits a sense of entitlement. Upon deviance from this standard, a monstrous attitude is generally displayed by the special individual. If one accepts this definition to be generally accurate, I believe I was the product of the good old defense mechanism of projection hours ago; this person’s hostility towards me is because she believes she deserves the same treatment as me. You know what? If I had the ability to generate Cerebral Palsy, an unknown motility disorder, narcolepsy, ADHD, bilateral exotropia, and a slew of other conditions upon her for one day, I’d be confounded if she didn’t request to have a few additional accommodations made for her in housing.

However, since I do not have that power (yet), and I would not knowingly cast sickness to someone else, I hereby declare that the world exudes greater understanding and empathy towards special needs, rather than look upon it as an unthinkable act, and admonishing circumstance.

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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.

 

In the transitional living and program I attend there is this person I’ll refer to as chipmunk as she’s always scrunching up her nose and acting like Thumper from Bambi as far as her leg twitches is concerned. She is constantly policing everyone, and their items. She saw an item that a house mom already approved for me to have, mentioned it to another house mom, and ultimately by snooping through my items, an approved item of mine was confiscated.

Tonight I mentioned I’d be in the bathroom for ten minutes. Five minutes into my shower I hear a knock, and her voice penetrated the door somewhat quite below the splashes of the shower that I was standing in. I mentioned I couldn’t hear and that I’d be out in a few. Moments later, another knock. I mention that I’ll be a few minutes, yet again. I turn the shower off but two minutes later and what should I hear? You go it, another rickety rack against the wood frame separated her from me. I told her that I’d said I’d be ten minutes, it hadn’t been that time yet, and to let me finish drying off and changing rather than talking to her about the situation changing. She continued to whine and perpetually knocked on the door. I made it a point to ensure the dryness of the bathroom floor, as I do not want anyone slipping. She told me I could just open the door put on a robe, and she’d get her stuff.

It was going to be  the same amount of time for me to put a towel on as it’d be for me to finish changing. Plus, I don’t want anyone seeing me in a towel. So I declined opening the door until I had completed dressing. She continued to babble on and I’d had enough, saying, “You think you own the place, you go around acting like you own the place and you don’t so please, stop acting like you own the place.

Incomprehensible wordage came from her mouth and I walked out in a verbal huff. I spoke with a friend who was in the house at the time, and he said people may confront me tomorrow regarding the noise I made walking through the house and waking people up. So great, another reason to have to stand up for my own rights, because now my CP and stomping clouds people’s vision. I understand if my voice woke them up. Let’s see them try to use this as a concern. Temporary loss of sleep on their end or permanent disability on mine?

People are aggravating and causing drama where there is no need for drama to exist. These girls need to focus internally at their own recovery not at me, or the externals. Police yourself for once.

My Body is Falling Apart on Me… or, am I falling apart on my body?

Posted: 20 J0000005UTC 2011 in Education, Entertaining, Health, medication, Update
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interactive symptom checker

I think if I used one of these interactive devices, I’d overload the system.

As mentioned in previous times, I have quite a few afflictions. I’m always fascinated by the medical professionals who look at the piece of paper (containing medical history first) and then at the patient. If you were to “see me on paper”, I look like I’m dying, or should be a 500 lb. couch potato (no offense to you “couchies”- made that one up on the spot. Clever, eh?).

We’ll start with physical diagnosis and work our way across the board to emotional and psychological diagnoses (current and past included, you’ll see):

Cerebral Palsy-got that one at birth, lovely umbrella diagnosis. If only it covered or explained all of my ailments

Jaundice-birth, but after bright lights blinding me, good to go after a few days

Hyaline Membrane Disease (severe), also at birth, due to swallowing mother’s blood- ewww! No longer an issue, but am I now a vampire?

Not sure if this warrants its own line, oh well…. Multiple blood transfusions as a baby. Glad in this case to not be a Jehovah’s Witness (nothing against them, just might not be alive if I was one considering they don’t believe in receiving blood transfusions).

ADHD-definitely super duper severe (according to one dr., even with meds.) An acquaintance once said I was the poster child for this. Though I believe I have this, I wonder if the diagnosis is correct. The signs/symptoms didn’t appear until about 9.

Anemia-on and off since young adult-ish era

Poly Cystic Ovarian Syndrome/Disease-diagnosed at age 20, essentially reversed illness by age 24, doctor was surprised, but I got off of Glucophage (a medication for Diabetes as I was considered pre-diabetic)

Hypothyroidism-unsure if it was lithium-induced or biological in origin. Doctor never took a baseline level prior to initiating lithium therapy. First blood test showed poorly functioning thyroid levels. Have tried (with endocrinologist’s approval) to discontinue drug therapy. Unsuccessful with attempt, levels did not remain consistent off of medication.

Insomnia- this one can pretty much go back to as young as I can recall. Horrible sleeper as long as I can remember. This resulted in a diagnosis of

Narcolepsy- yep that’s right, I have clinical primary narcolepsy and primary insomnia. The doctor is mystified. Note, cataplexy though a hallmark sign of this disorder, not a necessity to make an established diagnosis. I do not have cataplexy just random falling asleep usually when under stress or extremely bored and unable to move.

Exploding Head Syndrome-yes, this is a real diagnosis as I have to explain to most healthcare professionals upon giving them my full health history. It’s just as it sounds; a large noise occurs in the head (not schizophrenia thank you) during the period between wakefulness and asleep. It is rare to happen more than a few time, rare to happen in females, non-smokers and usually only occurs in obese, over 50 years old populations. Well, I am female, under the age of 50, not a smoker, not obese and it’s happened countless time (more than 3 dozen)

PNES- also know as (Psychogenic) Non-Epileptic Seizures or NES. Traditionally, it was thought that these were “pseudo seizures”; until recently it was thought that the person was faking these seizures. It is not false advertising folks, it is an actual seizure without brain wave alteration. These seizures are brought on by stress as the name indicates.

Borderline Personality Disorder-if you have read any of my previous blogs, you’ll see where this one stems from with a heavy history of abuse and neglect.

Situational Depression- Sometimes I think I’m lucky for it to be merely situational. At other times, I am considerably frustrated because there is not a medication which alleviates situational depression and I often run into situations which trigger it, alas, it is a constant on/off battle with my brain.

EDNOS- Eating Disorder Not Otherwise Specified- I alternate between periods of Bulimia and Anorexia, and ordered-eating, so I get this essentially throwaway diagnosis.

OCD- I used to believe that I had the rarest diseases. My doctor even said to me, “most people come here thinking they have cancer, or AIDS and you present with this (Hanta virus)? I mean it makes sense considering my family’s medical history and my personal medical history that I should be concerned about having the rarest of diseases, right? Fortunately, I went on a awesome medication at age 15 and discontinued it at age 18. I was essentially symptom-free. Sure, here and there I have medical student syndrome, but as for all of the diagnoses I’m listing, these have been established by medical doctors or professionals.

Seasonal allergies and allergies to half of the world-trees and grass for seasonal, mold (all year-round) mild allergies to Cantaloupe, Honeydew, Coconut (in excess of a small amount), Kiwi (in excess of a small portion), Mango, Pineapple, Walnuts, Pecans, Macadamia Nuts, Chestnuts. There’s probably even more than that, I just don’t always recall it in full detail. I do however know what I’m allergic to if I were to come across it.

Urticaria, unknown etiology surprise surprise. If I’m stressed and don’t react with either eczema, a stress seizure, dissociation, surely something will appear. I’ll guess this is the etiology for the hives.

Paralyzed vocal cords-for nearly one and a half years, I didn’t have a voice. Initial speculation was cancer, followed by unknown (for most doctors), followed by overuse, stress, hiatal hernia. The whole time I presented to the doctors that it may be attributed to mold toxicity being that I tested positive for three types of mold in my system. Each physician shooed that diagnosis away aside from the non-traditional physician who initially mentioned and tested me for it. Unfortunately, he was 3.5 hours away from where I was living at the time, and I only had one day off per week, spending it going to doctors a bit closer, and occasionally relaxing. The voice came back after leaving the moldy environment and then disappeared again when I returned to an excessively humid, and therefore moldy environment, complete with breathing challenges.

Hiatal Hernia-one day my stomach felt weird, I went to an urgent care, and was referred to a GI doc. I had an endoscopy where they biopsied a part of my esophagus and this lovely diagnosis was made.

Nasal Fibroma- removed when I was 18. Removal lead to site infection which spread and led me to stage 4 antibiotics, the summer before I was set to begin college. My freshman orientation was a blur to me as I was still recovering from the infection and doped up on pain pills. Great way to end high school and start post-secondary education.

Thornwalt cyst-yeah I think I still have this one, no need for removal though as it’s not causing any signs/symptoms that I’m aware of.

Scotopic Sensitivity- sensitivity for me includes to light, and certain colors. It’s a perception disorder. Irlen Lenses can help

Speaking of perception disorders, I probably have Sensory Integration Disorder. That’s not diagnosed though believe it or not. There’s a time and place to see a doctor for things, particularly when it is necessitated. I have gone to far too many doctors offices and spewed out my history. As I’ve conveyed, on paper it looks like I’m dying, so I try to avoid stepping foot into a doctor’s office unless I have to, or because I’m observing a super awesome surgery (as I did a few weeks ago). Plus, our healthcare system does not make things financially feasible to go for any condition, never mind the significant ones.

xxx (Ken’s partner at the moment) has unofficially diagnosed me with Aspergers syndrome. I don’t take to heart what she says, even if she is a physician because she’s full of issues herself, namely an untreated personality disorder.

As a child, I had processing disorders, namely auditory processing and reading comprehension challenges. These can be referred to as learning differences or learning disabilities. Semantics.

Well, that about sums it up for now. I assure you, that if I think of any more or I receive additional diagnosis, it will be posted on this here lovely page in due time.

Thank you as always, for choosing to use your limited time to read this blog!

One step, two steps. Through the silence, I walk, people know I’m coming, regardless of intention.

That loud shuffling noise, yep that’s me. Image

It’s a love-hate relationship with my shoes.

I love them because they are the type I need and supportive for how I walk.

I hate them because it’s known who’s around the corner, especially in a classroom building full of tiles and silent people. I hate them because they produce a squeaky noise every time I step. The orthotic made for my shoe gets compressed every time I step, and every time I step… squish squash squeakiness is felt, made, and heard.

 

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Wow, I’ve never had someone believe so much in the capacity of my brain and my possibilities than my current biology professor.

When meeting with her for a routine matter (figuring out how to better equip myself for exams), she made comments like, “I’ve never had to tell any student this before, but for you, you have to memorize.” Apparently, that’s the part that comes easily to people as opposed to grasping the bigger picture and making connections. She said, “if somehow we could harness your brain and what it does… Your brain is unique”.

I went on to tell her a basic version of my struggles with Cerebral Palsy and how I wasn’t set to do anything in life.

She was just short of astonished, saying she never would have guessed.
She really, truly believes in me, and tells me this without any sort of prompting on my end.

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?