Archive for the ‘Health’ Category

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.

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.

I’ve been struggling quite a bit lately after having been in hospital as the result of doctor neglect and incompetence. I thought I would die and since I ended up having sepsis, the reality of death was certainly possible.

A friend just called, one who I saw just hours ago. She was speaking to some friends about the concept of a healing room, and relayed what her room is like.

She invited me into her room, for healing. Her room sounded incredible. There was a part where she described a rock ledge when you lay on it molds to your body and the sun shines at different points. When she was describing hers, some of her imagery was similar to what my healing room would be like.

Then she asked what mine would be like. This is it:

My healing room would be entering into a lush green forest with a waterfall that splashes all in the middle and is the most brilliant blue.

The room has a door where once you enter, all negative energy is repelled as like the Patronus curse in Harry Potter.

The room cannot be found on a globe and can only be felt by a person. Of course my room has angels and my friends who are half angel and half human. The room has the ability to have others in it or just for me because sometimes healing is a solo mission.

He didn’t just mess with my body, oh no. That doctor messed with me psychologically, he didn’t listen to me when I said something was wrong.

I’m behind in school, because of his error. Catching up means I don’t have time to hang out with friends. I was already socially excluded when in hospital, now I’m continuing to be socially isolated attempting to catch up on work.

And yet, I can’t seem to do work to my usual level. My brain is foggy and I’m tired. I get it, I know, sepsis destroys the body.

Today a classmate said, “just break apart the word antibiotic… Anti-bio… It destroys your cells, the good and the bad”.

That’s when it occurred to me that the massive doses of IV antibiotics I received last week are similar to chemo-both medications destroy cells.

And so I sit and think about all of the work I must complete and then the psychological effects set in more and I become depressed.

I haven’t been depressed like this in over one year. He emotionally messed with my sanity too.

To think, this was all brought on by failures of the medical system. I hate being sad and I want it all to just disappear. The mistakes, the medicine, the hospitals, sometimes even my strength.

I don’t know how much more I can endure of this shit.