Archive for the ‘Update’ Category

Since I’m on this kick of stream of consciousness, I have to write what is currently irking me. Last night, the house staff approached me to have a “pow wow” in the front room. She has a pack of pudding in her hand and tells me that this is for me, _____ is replacing it because she ate mine. I looked at it, saying, “well I don’t know if I can have this brand, I’ll have to check, I can’t just have any brand”. She proceeds to tell me that this is the same brand ____ took. I thought for a moment, saying, “I don’t have this brand, so it wasn’t mine.” She confirms this with me, and then goes back to _____ saying that it wasn’t mine and asked her what she wanted to do with this (replacement) pack. _____ says to put it on her shelf in the refrigerator.

Granted, _____ didn’t take my food this time. My concern is when is this binge eating others’ food going to be looked at as stealing? I understand I am in eating disorder treatment and yet there has to be a barrier, a line drawn, and someone has to realise that even though it wasn’t my food this time, it has been my food in the past. I honestly am at a point of absolute disgust; I don’t care whether or not the food is replaced; at what point is this going to be seen as a violation of boundaries and trust, and that this is actual theft? And to be clear, I am not entirely biased and think that stealing food is wrong. After all, at the age of 7, I played the boy in the marketplace in Aladdin and my sole line was, “I want an apple, I need an apple, I’m hungry.” Then Aladdin goes on to get food for me through stealing… or something like that…

However, this person taking the food is not poor, is not a child, and has the resources to go to the market herself. And Aladdin was a play where no one who could afford food actually took food outside of scripted lines. This person I am referring to who took the pudding likes to have her entire life catered to her, lay in bed for days on end, expecting people to care for her, and people to be quiet and cater to her every beck and call. I am not one of those people who is going to act any differently towards her when she is in one of her states, and I am fuming that she gets away with taking food time and time again.

I recently went out and bought a lot of delicious food because I may be unable to drive for a while after my eye surgery this week. I want my food to remain there until I consume it, not anyone else, less they have my expressed permission. I am not living in a place where food is communal, and I have limited finances to put towards food, and am grateful that I receive money each month to purchase food. How dare someone take my belongings, especially without asking. It wasn’t me this time, it was someone else. How unfortunate to think that I live with a food thief, a person who thinks that she can do anything and get away with it. She has done more than most and not received consequences. She speaks in a harsh tone to others without so much as flinching, she lays in bed for days without being discharged or moved to a higher level of care, and she steals food, even though she has the money. Amazing what money does to someone; now go to the store and get your own damn food with that same money.

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.

I guess I don’t really need something dramatic to fill up this space every time I write. I notice that is usually when I write-when shit hits the fan. I’ll write about family today, and the aspect that everyone seemed to negate in my life namely therapists.

I’d often complain or be sad that I don’t have a family, saying that’s who is supposed to help me through the rough times. Therapists always gave the generic, “Your family’s toxic, you need to find friends who you can utilize as your support system”. Then I went to Denmark, and prior to my arrival, during my last appointment with my dietician, she said I could stay here (at the treatment center) for a really long time, and that I’ve built a support system here.

I told her that I’d be living with a host family and she said, “That’s not the same, they’re not going to be your family.” Those words dug at me deep because I knew that DIS (where I study abroad) hooks students up with amazing host families and that the experience was more than a traditional host family (not that I’ve had much to compare to).

Still,  I didn’t have much to retort with to her aside from, “it’s different”.

Fast forward to four months later, my last night in Denmark before I was leaving on a short break. I walked through the doors after completing my last final exam and found that my host grandpa died unexpectedly. I felt compelled to stay and not leave the following day, though I had business to care of in the US.

Before she went to bed, I gave my host sister a present. Her mom, “our” mom Katja was around as I gave the gift.

Months earlier, Victoria had seen my harmonica and really seemed to want her own. This was the gift I gave to her that night.

Katja began tearing up, saying that her father played the harmonica. I had unknowingly kept a tradition going while making my 9 year old Danish sister satisfied.

Serendipitous moment.

Image

Starting out three months too soon,

He didn’t make it.

My twin was too little,

I took the nutrition,

This you’ll hear, is my rendition.

Left alone, parents aside.

Only touched out of necessity,

Rarely for love comfort,each time much brevity.

Fed through my head because I couldn’t feed.

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

In the womb, next to my brother,

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

Moment near him as they swooped him away,

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

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

Appearing aloof.

Bitterness abounds as my family breaks apart.

It was at my birth, at my start.

Sure there were problems and problems before,

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

Regardless, I was an innocent life,

Quite fragile, delicate, and constantly under the knife.

They thought I was stupid, young, naive.

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

Not wanting to believe,

That my parents couldn’t love me,

That they constantly grieve,

The three children they had

1 dead

1 dying

and the last, keeps trying.

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

I stepped away to grow up on my own.

From a very young age I never connected,

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

They never stepped up, they never confessed,

That all this, all this came from distress.

If they were dead, this life might make sense.

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

I despise them, I pity them,

For parents they are not.

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

No one helped me as I sat in despair.

I was the crazy one, life perfectly unfair.

I was judged, ridiculed, abused all the time,

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

I didn’t, I was just a little kid,

Shouldn’t have to take care of myself,

Yet I did.

This pattern created a grown up too soon,

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

I began to rebel, only from them,

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

The monster within me wouldn’t leave,

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

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

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

I did have Barbara, emotionally and completely destroyed.

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

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

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

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

I yearned to connect, to please have a family,

No, not for me,

That would be uncanny.

As my world unraveled, I followed suit,

How did I not die on this treacherous pursuit?

I was done, ready to die,

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

Somehow I’ve lived, they call it fortuitous,

They call it a miracle, they call it bliss.

I don’t know what to say,

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

I want to live, to stay alive,

Yet there’s uncertainty and death has been near,

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

Caught in the headlights, unsure how to proceed,

As the angels waited nearby,

Would I concede?

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

But I was ready, done with the drone,

Of being sick, unloved and unwanted,

The only hope I had left, slowly dissipating,

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

Too scared to die, too tired to live,

I drifted through the night, unable to give.

I woke in the morning, rather confused,

The medicine finally worked, I didn’t lose.

I was alive, albeit tired, weak and meek,

Wanting to finish school, week after week.

I loved where I lived, not wanting to leave,

Yet I had to, this time,

If I wanted to breathe.

Life is breath,

Breath is life,

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

I’m alive now, I’m writing this down,

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

I was happy there, though I was sick.

I had friends, ones I could pick.

I’m lost here, where I don’t belong,

I’ve nothing here, not even a mom.

I have me, only me, someone I despise,

Who stole from a baby, ripped apart a family,

All by being alive.

 

 

 

What did I do wrong

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

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

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

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

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

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

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

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

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

Remember when,
We were friends?
When I came to you and you came to me, and
Everything we did together was in near -perfect synchronicity
I miss those days, those times, those moments,
Most of all I miss you.
I should have known I couldn’t depend on you.
I should’ve known you weren’t for real.
All that glamour, too much appeal.
I was suckered in right from the start.
Actually thought your words and feelings were coming from your heart.
Instead, they were coming from your mind, and I was blind-or merely naive.
Looking back now, how didn’t I see that you’d eventually leave?
Nothing I did wrong, nothing in my control.
I became sick and you became, well, full.
Full of life, full of bs?
Doesn’t matter which, because I won’t get my wish.
To have you near, to have you around.
What I’d give just to hear that sound.
Of you answering the phone or opening the door.
To have you in my life, just once, no more.

I’m going through some crazy medical adventures and a lot of people are bewildered at how I can handle this.

Support is key: when support is diminished, mentally sink.

Even if it’s one person, one smile, one kind word, I am helped, uplifted.

I struggle a lot and apparently the medical challenges are not getting easier, perhaps will become more complex in the future.

Yesterday I was told by my somatic practitioner to take it one month at a time. She didn’t say second by second or day by day as most people often relay to me. She doesn’t negate the future because let’s face it, the future is a likely reality. A month seems practical. She says things seem to fall into place for me eventually-I don’t like how that tends to be relatively last-minute.

Spirituality. No I’m not gonna go on a rant about what’s best or what to believe. Knowing/believing something greater than yourself exists may help. I’ve tried to not have my spirituality falter through these times, and truthfully (what else?), that’s been rough.

I feel happy today though and I’m gonna leave it at that. I’m grateful for this day and this feeling.