Posts Tagged ‘illness’

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.

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.

Image

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:

Image

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.

 

You have to recognize his reality doesn’t exist in our reality; it is a constant state of denial and turmoil, that’s his reality. It’s devoid of higher-functioning emotions and full of Id emotions where his wants, needs and beliefs rise above all else.

As for her reality, it’s tainted entirely with illness. Her reality includes illness. Being ill reaps reward, often in the form of connection and love.

I exist outside of their realities, though I was created by their realities colliding. I am squashed.

I’m grateful to have something productive to do with my days; I returned to school as a “mature” learner (I think it’s called).

Jealousy is on my mind tonight. Things I admit being jealous of:

-Not having my original freshman year turn out the way I planned. Had a severe infection summer before college and missed out on most of the orientation getting-to-know-you activities being doped up on medications.

-Lack of a support system. All of these people constantly talk about their parents, their family, their significant other, blah blah blah. Who do I have??? No one healthy to say the least. No one in close proximity to lean on, to be ok crying in front of, someone who won’t send me to the hospital when I say I want to self-harm.*Note: Crying in front of my advisor (who I only met three weeks ago) is more embarrassing than comforting, though she was kind about the situation.

The first person who I believed actually believed in me is a doctor, who works over an hour away, and due to legalities, it’s not like I can just pop in for a chat. I’m fortunate to have e-mail communication with her though.

-Just got word that a friend of mine is going to a program this MD heads. I’m quite jealous simply because the MD is incredibly supportive and I need someone like that on my side.

-On breaks, where do I get to go? No where. I’m worried about all of that time alone.

-Having financial security. My finances are slim and only getting slimmer.

-Sleeping at night. I can count on one hand, maybe two how many nights of my life I recall being a good, restful night’s sleep, not induced by medications. I am terrified of the night. I am alone at night. For me, it’s just all all-around terrifying situation.

-Friend having a baby. I’m happy for her, unplanned as it was. I know I want to have a child and not necessarily for the best reasons; except someone looking up to you, and me essentially having unconditional love for that person, that is something I crave.

-Spirituality: I am “spiritually bankrupt”. I am trying to replete this account. I need some faith back in my life. Attended two services this week, please I hope the connection comes soon; I’m hanging on by loose ends.

-Intelligence that comes easy, or for that matter, anything that comes easy. My day is constantly slowed by the pace I walk, the speed I process, the words I attempt to convey in a class, in a conversation.

-Emotion Regulation- If my emotions were associated with an art product, it would be the most colorful paint palette available. They are too strong, and change too quickly. As I believe I’ve mentioned in previous posts, I can feel like I’m on top of the world and want to die all in the same day, same hour for that matter.

-A way to vent that is productive and healthy.

-Going a week without actually wanting to die. I still want to; I want for one day to go by where I don’t regret that I attempted to take my own life one and a half months ago.

-Jealous of people who have people, again, support. It’s a lonely world.