Wednesday, 23 November 2016

HOLIDAYS, part 2

HOLIDAYS, part 2


Living in a home that has never been my home is a problem I have addressed a little in: Living with the 'enemy'.

Living there with the upcoming holidays is a bit of a challenge now. Last week we had a discussion about my home situation with my psychiatrist, social worker, my parents and myself. Although my parents had chosen to take me into their home, they hadn't foreseen the amount of work and time it would take to help me through my days.

I could have told them right away, and I did actually tell them, but as with everything, you only understand it when you experienced it. So, here we are. It is not easy. For the time being there will be a nurse mornings and evenings to make sure I get in and out of bed, take my medication and to help me shower. And, to all of my hospital and doctors appointments, a taxi will bring me.

Emotionally speaking? It is hard. I never had a home and I felt at home somewhere for the very first time of my life. It feels like the safety and love is taken away from me.

My sister is angry. Her husband and she are now clearing out a room on the ground floor of their house for me. Their little son, who until today sleeps there, will move to a bedroom upstairs. And for part of the week I will start living with them. First as a sort of 'test' to see if it works, and we all feel happy enough. And if we do, it may become permanent.

And the holidays? This will be my first time I m going to spend the holidays with my sister and her family, and a little spark of hope is flickering in me.

Happy Thanksgiving America!

Wednesday, 16 November 2016

HOLIDAYS, part 1

HOLIDAYS, part 1

Soon December will wash over us, with all its warmth and sense of belonging and community. That is a good thing.




For me it is ambiguous, ambivalent. Until I was 15, I had never had a celebration of anything. No birthdays, no Christmas, nothing. It is new, and I have to admit that I am not sure how to feel about it. My father, mother, my little sister, and my big sister and her husband are already excited, and they are discussing form, brand, and size of the Christmas tree to buy.
My little sister is writing a wish list on her laptop as we speak.




I am an outsider. I stand at the window, looking in. Longing, not being able. Hoping to be seen while wanting to hide.

To make matters worse, my back surgery has been postponed until I am physically and mentally stronger. I don't know how to do that. I am not anorexic, but I DO have problems eating. And the constant nightmares, flashbacks and the pain make me nauseous. It's a challenge. I will have to find food I can stomach, pun intended.
And if anyone has a way to handle pain? By all means, let me know :)



See you later with part 2

Friday, 4 November 2016

LIVING WITH THE 'ENEMY'.

Living with the 'enemy'.


The strange house I am living in, I am not completely used to it yet. The people surrounding me are my flesh and blood, but still they are strangers to me.

I left the house when I was about 2-3 years old, and never saw them between ages 9 and 15. I cannot see them as parents anymore. I learned I had a little sister when I was 15.....

The only person I am still strongly attached to, is my older sister. And also her husband and her two little ones. They wanted me to come and live with them, but I refused. They have a young family and both have jobs. Taking care of me would be one extra job, I cannot do that to them.

So.... after mediation by my psychiatrist, my parents have agreed to let me live with them. They want me to.  And between hospitals I did not have a real place to live, everything has been temporary. Now suddenly I have a permanent place to live. With a futuristic bed, a desk, closets.... It's strange and I am not yet used to it.

There are so many issues we have to get out of the way. They have sessions with a therapist, I have them, and sometimes we have them together. Problems we face are for instance:

  • My mother goes to church every day to pray for my healing. Healing in the sense of physical and mental healing, but also..... she hopes to pray me cured of gayness, because she honestly thinks my grandfather (her father) made me gay;
  • My father and my little sister are autistic. I have no problems with that, it's quite refreshing, but my intrusion in their regulated lives gives them some problems;
  • My health in every way requires a lot of maintenance. A nurse comes by every day to help me take a bath and so on;
  • We are still so awkward around each other. Strangers in a strange land.

Family ties. We can never choose our biological family, but sometimes, for diverse reasons, we suddenly are back to biology....
I love my chosen family. Will the day come that I love my biological family?
I certainly hope so, let the awkwardness disappear!

-Darren.

Monday, 31 October 2016

ʿArūḍ

ARUD


Metre (or meter) according to Wikipedia:

"In poetry, metre (meter in US spelling) is the basic rhythmic structure of a verse or lines in verse. Many traditional verse forms prescribe a specific verse metre, or a certain set of metres alternating in a particular order. The study and the actual use of metres and forms of versification are both known as prosody. (Within linguistics, "prosody" is used in a more general sense that includes not only poetic metre but also the rhythmic aspects of prose, whether formal or informal, that vary from language to language, and sometimes between poetic traditions.)"

Arud is the arabic science of prosody; of poetry; of poetics. As in any other system (western, greek, latin), arabic poetry relies heavily on meter. In all countries with a strong oral tradition (oral meaning here: not written transmission, but by recital, singing and so on), meter, cadence, rhyme (internal and otherwise) is even stronger.

My studies concern the whole of Arud, but to limit it down, I am working on the poems of a totally megalomanic poet: al-Mutanabbi. I won't bore you with this, just mentioning it.
Most of us use a sort of rhythm when we make a song, or a poem. But these rhythm have names and are categorized for ages now. Let's name the ones most frequently used in western world:
IAMB: -v  -v
TROCHEE: v-  v-
DACTYL: v - -  v - -
ANAPEST: - - v  - - v

And an example of Iamb:
Shakespeare: Come live | with me | and be | my love
In the iambic meter, stress is on the syllable I made bold and italic.
Official notation: -v | -v | -v | -v
Where unaccented syllables are represented by '-'
And accented (stressed) syllables are represented by 'v'

Meaning that Trochee starts with an accented syllable, followed by one unaccented; Dactyl with an accented, followed by two unaccented; and Anapest with two unaccented, followed by one accented syllable.
Short but hopefully not too confusing explanation of how we in the western world often use rhyme and cadence, and the most commonly used names for these rhythms :)

Arabic has a similar system.
The Arabic word for meter is tafa'il (metrical feet), The metrical system of Classical Arabic poetry, just like those of classical Greek and Latin, is based on the weight of syllables classified as either "long" or "short" or, as we have seen above: stressed and unstressed; accented or unaccented.

The fun part for me here is that the Arabs have (parts of) words to indicate every syllable in a specific meter. Now here it is getting weird for you, I realise that, so I will give you just a small example found on Wikipedia:

Western:   v –  –  v  –   –  –  v – –   v  –  v –
Verse:    Qifa nabki min dikra habibin wa-manzili
Mnemonic:  fa`ulun  mafa`ilun  fa`ulun  mafa`ilun

The mnemonic here indicating a help-line showing exactly the rhythm and positioning of the v and the -. To the new eye of a starting reader, those v and - seem to be positioned randomly. By adding the mnemonic, a pattern arises.

Now here I will stop before it will become too difficult. Have fun reading, and if you want to know more, just ask :)

-Darren
with love.

Addendum, taken from: http://lecturers.haifa.ac.il/en/hcc/rsnir/Documents/Other%20Barbarians.pdf

Meter According to the conventional metrical system that was unchallenged in Arabic poetry from the pre-Islamic times till the mid-twentieth century, every verse [bayt] in a qasida [the classical ode] consists of a certain number of feet [taf‘ila, plural tafa‘il], divided into two hemistichs. Every foot [taf‘ila] consists of short (U) and long (-) vowels. Each one of the sixteen meters consists of different sequences of feet. A common rhyme is used at the end of each verse throughout the entire poem even if it consists of hundreds of verses. In the late 1940s, there emerged a new metrical system of “free verse” called in Arabic shi‘r hurr [free poetry] or shi‘r al-taf‘ila [poetry of taf‘ila]. The essential concept of this system entails a reliance on free repetition of the taf‘ila, the basic unit of the conventional Arab prosody—i.e., the use of an irregular number of a single foot instead of a fixed number of feet as was dictated by the classical meters. Additionally, in shi‘r hurr there is no need for a common rhyme throughout the poem. The poet varies the number of feet in a single line and the rhymes at the end of the lines according to his need. In Darwish’s collection all the poems use the new system of “free verse,” but what is highly peculiar in this collection is that a single foot, that of the mutaqarib meter (U - -), is used in all of the poems. This is a rare phenomenon in Arabic poetry; ever since ancient times poets, even if they wrote on the same theme, generally used various meters for different poems, as in the case of the qasida; modern poets have used various feet for different poems. Here Darwish uses the same single foot for all the poems, as if to direct the attention of the reader to the unified character of the collection. Of course, it is this unity of the meter that enabled Salman Masalha to compose a poem from the titles of all the poems, serving as a kind of summary of the entire collection.


Friday, 28 October 2016

COMA

COMA


Five, no six years ago, I was rescued.
There was not much life left in me, and they needed to do emergency repair. But first they needed to make sure I was as comfortable as possible, so they induced coma.

In between the nightmares that haunt my every night, sometimes I am having the strangest dreams, in which there are sounds that are not very coherent, but soothing.

Sometimes small fragments of conversations moving from my left to my right, in which my name is mentioned but of which I can't understand anything. People with concern in their voice; authoritatve; loving; caring. Voiced in several languages. Or maybe in one language, but I am not able to understand any language except my own incoherent thoughts.

Sometimes small rays of light whirl in front of my eyes and sihouettes moving through them, in silence. A smile around a mouth. And then the heartbreaking sobbing of my little one, whose voice I wil recognise among myriad other voices.

Sometimes I felt things. One time I felt my little one taking my hand and put it on his head while he crept next to me on the bed. I KNOW, I REMEMBER, and I felt tears in my eyes. This did happen, because months later I had the chance to ask about this very vivid picture in my mind, and it was confirmed by nurses and doctors.

Soft beep beeps. Comforting sound in a strange environment where I seem to float. And a wish to open my mouth and produce sound, but nothing happens. A painful feeling in my throat where something is inserted that prevents me from speaking.

It is all this I have been trying to condense into this small poem:
My COMA poem. Click me please.

It is not meant to be a negative poem or blog post. On the contrary really. To me personally it means that despite the coma, I was able to feel, see and hear, in a dreamlike fashion. And all that while they managed to keep the pain away from me. If anything, this is something I am truly grateful for.

Friday, 21 October 2016

GRANDFATHER

GRANDFATHER


How I lived with my grandfather... For a long time I saw my grandfather as family. Until some months ago, when I was talking about it with Cody, and he said me to not see the man as family anymore. Because he never saw me as his grandson, but as a commodity, something to discard.

That was an eye-opener. It worked too. It is hard enough to be trafficked ware by strangers, but to be sold by my grandfather is worse, because all I ever wanted was to be his grandson, to be loved by him. And later I wanted him to tell me how sorry he was, but he never did, and he died during the trials. 

How was my life with him? How did I end up living with him? That last part has been finally explained to me by my parents. When I was two years old, my grandfather came to live in a house nearby. He started to abuse and threaten me straight away. Powerless and afraid as I was, I couldn't say a word at home, so I became an angry child, screaming, kicking and wetting my bed again.

My grandfather suggested to my parents that I came to live with him, he would "straighten me out".... and they agreed. And that was the beginning of the misery.

Life with him was strange, a deadly combination of incredible violence, a gifted teacher (he homeschooled me for longer periods of time) and travelling all over Western Europe. I have lived in Southern France, in Norway and so on. He had such strange mood-swings. Could be loving one moment and turn violent the next. He dressed and raised me as a girl, but when I acted like a girl, I was 'punished'. 

My world was so split and torn, and the only thing I did all day, was trying to survive as best as possible.
He was well respected in the Coptic community, was a scholar. People looked up to him and sometimes remarked to me how lucky I was to have him for a grandfather. Yes, really.

He was a true pedophile. Had cameras everywhere in his house, and shared films of me online. Most have gone, but some are still out there and I can't do anything about that. Believe me, there are so many attempts to delete them but they keep surfacing. He also invited friends over to his house. Let's not go any further, I bet you can fill in the blanks.

And then, when I was about 9-10 years old, I became too old for him, and he sold me. That's another story, maybe later.

Bye bye!
D.

Monday, 17 October 2016

The many face(t)s of depression

THE MANY FACE(T)S OF DEPRESSION.


What does depression do to me? It's an ever present, strangely quiet companion. I know it's always there, lurking. When I feel good, and people ask me how I feel, I say: "Feeling great". And I do feel great then, it's not that I am lying, it is more that in the back of my mind a little voice is speaking to me, telling me: "Sooooon, soooooooooon my friend and I'll hit you again". 

It's a paralyzing fear sometimes, the fear for a next major episode. The episode that lands you for a longer period of time in a secluded, closed part of mental hospital, because... yeah because... Sometimes not even because you tried to kill yourself, but because you are utterly incapable of taking care of yourself.

Depressive state (the state I am in for a few months now) is less severe, but sometimes debilitating. What does a 'low'  do to me specifically?

  • It silences the writer in me;
  • It causes me to write bad poetry, whining sort of;
  • I feel physically ill. My head, arms, everything hurts;
  • Light hurts my eyes, sound hurts my ears;
  • Food comes back out through my mouth faster than it went in;
  • Putting on my clothes is a major achievement, as is brushing my teeth, afterwards I need to go back to sleep again;
  • I isolate, it is hard to reach out, still I do because I know I need people and often I feel a lot better after some banter that makes me cry with laughter;
  • Yes, depressed people can laugh uncontrollably, weird huh?


I regularly speak with a friend who also suffers from depression. And we compare symptoms, a lot are the same, a lot differ. All people are different, so every depressed person is different, and everyone experiences different symptoms.

Also everyone will have a different opinion on what symptom exactly is the most debilitating. And so there is no common denominator other than this: having an illness outside people often wrongly determine as a state of being sad, while inside people will not deny the sadness, but more often describe an all encompassing tiredness that causes you to halt, stand still, drop down and hide.

Monday, 10 October 2016

The comfort of dark spaces - or: how to live in confinement

Many of my nights end in horrible nightmares. For years now. When I could still walk, I would find myself in tight corners, under a box, next to a drawer, in a closet. My mind still hasn't understood that I can't walk anymore, in my dreams and nightmares I still can. Which means that I often drop out of bed and have no idea how I got there, or how to get back in. And then I haven't mentioned the terror of the nightmare yet. Which I often conquer while lying on the floor.

Oh, I made a comfortable mess of my floor for myself already, there are pillows and blankets there. It's okay, don't worry (I know you do, but please stop it ;) )

Small dark spaces give me comfort; my back pressed in a corner means that no one can approach me from behind; being in the confinements of a closet means that not just anyone can enter, as long as they don't know I'm in there. The first few years after I was 'free' again, I refused to sleep in a bed. They had to make a bed in a closet for me, and I know they felt sorry for me, which was not necessary. By granting me this comfort they helped me overcome the first anxiety.

I write my best poetry after nightmares, lying in the pillows that surround me, writing the terror away. I have learned how to move myself up into my chair and into my bed again, but I still prefer the small corners, the closet, a bed with blankets over my head, needing that illusory safety that I rationally can identify, but that the frightened child in me still needs.

Sunday, 9 October 2016

SPINAL CORD INJURY

A SPINAL CORD INJURY


My spinal cord is injured. Incomplete injury, as they call it, which means that my spinal cord (between T12 and S1) was not injured in its entirety.

My vertebrae, spine, and nerves are badly damaged and the pain is at times unbearable. That's why I often prefer to be in bed, but I also need a lot of physiotherapy so the rest of my body stays in shape and my blood circulation keeps flowing. And I train hard to keep my body in shape. Which means that my repaired arms will soon be a source of joy because I can do so much more with them.

Soon, SOON. When I have this horrible left arm surgery over and done with, and my other medication has me balanced once again.

In hopefully a month, I will have back surgery and they will fixate part of my back. It means that bending over will be harder if at all possible, but honestly? I don't care, as long as the pain will be gone or at the very least, be less.

What it is, me and a wheelchair, a sort of chair you can push or be pushed in, not motorized because I can use my arms. What is in the chair, is a small twitching person, me. Most of the time, I can use and feel my legs a little. My spine was injured, my vertebrae broken, so a quick lesson here:
  • I cannot  stand;
  • I cannot walk a few steps;
  • I cannot move my legs ;
  • I can wiggle two of my toes;
  • I am ticklish at the back of my legs, NOT the front, and NOT my foot soles.
  • I do not feel most of my legs, only a few spots.

I need a catheter and bags strapped to my leg. Isn't that sort of humiliating? No! What would be humiliating, is peeing my pants all day ;)

And last but not least: sex
Is anything at all possible?
Yes, it is, absolutely. But I am not going to tell you nosey peeps that in public.
Ask me in PM (if you dare) ;)

Tuesday, 27 September 2016

The Joys of Group Life

The Joys of Group Life



Group life is not for the faint of heart
The depressed-demonized
The PTSD-pricks
The anxiety-addicts
The Tourette-twists
The stutter-sufferers

Since I am all that, group life is not for me.
They say I am having 'social anxiety'. I say that's just another label, throw it in my basket.

I do not have social anxiety, I love interaction, am quite outgoing, only not in the way people want me to. What they DO want is mingling in daily life, seeing real people you can touch and all. Well, surprise, that is not my view.

For me meeting real people is a challenge. They want to touch me, which often sends me straight into a flashback and gives me enormous anxiety. It always leaves it up to me to explain why touching is literally such a sensitive subject. People, I do NOT want to be touched!! If I want you to touch me, you need to allow me to get to know you first, and leave the touching to me. And then, only then you are allowed to touch me.

Is this social anxiety? I do not think so. It is a combination of a horrible childhood and youth, (c)PTSD, anxiety, clinical depression, stuttering and Tourette and it is hard to live with.

Furthermore talking is a big obstacle for me. I perform well in the company of those who know and love me, but I am left completely speechless when I face people I don't know, or am forced to talk about subjects that are hard to talk about. And having to face faces with pity, or having to hear sentences finished that I didn't even intend? That's another challenge.

Having to see people react to my ticcing? Yet another one, and then the wheelchair!

It's a bit much to face, you see? You all know me in text and poetry, and you've slowly learned to know the inside of me, the person I am beyond the strange outside. Isn't that wonderful? The best side of the Internet? Something many so called experts fail to see and understand?

So, no, no social anxiety, just having to live with this me that is hindered in many ways, but fine in many other ways :)

It does however hinder therapy. I often stay in a mental hospital for young people like myself, with problems like mine. In here I am supposed to do group therapy. And the word 'challenge' is too friendly. Having to face those mocking faces every session makes me cringe inside. And yet I am not allowed to skip the sessions.

Oh, the boys here like me, don't get me wrong. They do not bully me, they see me as a big brother, but then a SILENT big brother who keeps his mouth shut and nods and agrees with every rascally thing they like to do.

I'd rather go to a regular mental facility, or do they do group therapy there as well?

Yours truly,
Darren ;)

Monday, 12 September 2016

Marḥaban 2

Marḥaban 2



Marḥaban! مرحبا Hello!

Kayfa ḥālak? كيف حالك How are you?

Egypt is also the source of my nightmares. Not the country itself, but the one person from Egypt causing them: my grandfather. He spoke to me in Egyptian Arabic, or English, never in Dutch. He used to be a scholar, played the violin and piano and owned a library that hardly fitted his large house..... And he owned me....

Without going into to much gruesome detail (hopefully), he lured me away from home by doing unspeakable things to me that made me a terrible infant at home. And my parents didn't understand why. I drove them up the walls apparently. But I was so small, and he had threatened me, if I said one word about what he did, ONE WORD. So I didn't.

He then told my parents that I could come and live with him, that he would sort me out, and so it happened. It was the start of a gruesome journey, travelling all over Europe and ending about 12 years later, when I was 15, in The Netherlands.

I would like to visit Egypt, but I fear hearing Egyptian Arabic, because the language triggers me, it gives me flashbacks and nightmares. And still I am  studying Arabic Poetry, I must be completely insane, right?

- to be continued -

Monday, 15 August 2016

Marḥaban



Marḥaban! مرحبا Hello!

Kayfa ḥālak? كيف حالك How are you?


I am Egyptian. Real and true Egyptian. I have two nationalities (Egyptian and Dutch) and I possess (if they give them back that is) two passports.


My family is from Alexandria (Iskandariyya). My sister, seven years my senior, is born there too and lived there with my parents until she was five years old.


My parents are Copts and had to flee the country.


Egypt is in my blood. My favourite food is Egyptian street food (see the poetry blog, it has a link to a few recipes I put there). I love to cook and I am a good cook. I'll put some more healthy and not-so-healthy recipes up there, including jaw-breaker baclava!


My Arabic roots have mostly given me love for Arabic poetry, contemporary as well as ancient poetry. I translate it and sometimes I am sitting here singing in my chair while doing so.


Is it strange to feel homesick? I've not even been to Egypt! I've seen all of Europe, I've lived in France, Germany, England, Norway, and some countries in Eastern Europe. Not homesick there. But Egypt?


I am weird! Officially!


(to be continued)

Friday, 12 August 2016

Arms, legs, back and the rest

Over the past five years I have seen many hospitals, all sorts, styles and sizes. Hospitals and their staff are interesting. Every country, every hospital is different in so many ways.

In some the staff is very authoritarian, meaning you as patient better adjust, and be quiet, stay in bed, and do as the doctor says.
In others it is more self-service. The doctor plans outlines, nurses make sure your IV and other medication is regulated, and for the rest it is DIY. Unless you drop on the floor unconscious, you can do whatever you like.

And then there is the hospital I mostly go to here. It is specialised in major trauma of every sort, from burns to brain damage, war wounds to traffic catastrophes. When they met me, I was barely alive and was flown in from a country far away. They didn't think I would survive and they kept me in a coma for a long time while they did the basic jobs necessary, not expecting anything. But of course I am stubborn and stayed alive against all odds.

They did well!
It is not their fault I need so much hospital at all. They are slowly fixing me again, bit by bit, step by step. I partially lost vision and hearing but hey! I can see and hear so that's okay. I can live with it.
I wasn't able to lift an arm, which means that apart from typing on my keyboard, and luckily being able to ride my wheelchair, a whole lot of new tricks needed to be learned to stay independent. But now they managed to give me back my freedom by fixing my right arm, and my left arm will soon follow. This makes me happy :)

After this they will start working on my back most probably. I do not expect to walk for more than a few meters/yards but that is okay. As long as they manage to decently fixate my spinal cord within my wobbly vertebrae I am happy. I love my wheelchair, but I don't love the pain and the uncertainty!

And then the rest.
Maybe one day I will tell you the rest, for now this is enough, don't you think?
Thought so ;)
<3

Sunday, 7 August 2016

TREES or SEA

Those who know me, are probably aware that I don't like trees. I don't like woods, I don't like forests. I would make a lousy Robin Hood, or Marian. They would have to drag me into Sherwood Forest yelling and screaming.

Forests are the epitome of everything that is wrong, embodiment of evil. To me.

Give me meadows with flowers, mountains and glaciers, beach and sea, and stars in an endless dark sky. Horizons vast and all encompassing. Roads broad and disappearing at the horizon.

I lived in the deep of the forest, the house was gorgeous, so were the lands surrounding it. Birds and little animals everywhere. The house was far away from roads and villages. The gardens beautifully kept, and no sound of highway, or human life to be heard, just the wind rustling in the trees, and singing of birds high up.

And nowhere to go.

Today I am living in a place where I can go to the sea every day if I want to. And I often want to.

But I also want me to like trees again, and to be in a forest, to gather chestnuts or little forest strawberries. It will take a long time, but I am determined.

Thursday, 4 August 2016

LONGING

The link is temporarily disabled sincce the poem has been entered for a contest!!

LONGING



The link is temporarily disabled sincce the poem has been entered for a contest!!

If ever there is anything I would like you to understand about me, it is included in this poem and this music.

When I was very, very small, I hardly remember what age, I was a happy child. That is what I am told. A child that liked to play, sing and dance. A child that liked to wear their mum's shoes and jewellery.

Then my granddad came along and my world changed. If it weren't for him, I would never have connected to our loving part of Facebook, never have found my marvellous friends. But do you mind if I tell you that I really wish the reason for meeting you all were a different one?

I can't remember anymore. What I do remember though is a body and mind memory. And a melancholic wish to be there again. A small child with a sister who made up all sorts of stories for her and me to play-act. She as the knight in shining armour, me as the damsel in distress, dressed in her dresses. I already lived with him, my granddad, but I wanted to be with my sister and my parents.

These snippets of memory colour my day with happiness, sadness and longing. It is that feeling that is captured in this poem with this music. THAT.

When I was still living in this mental facility near the beach, my psychiatrist had the habit of taking me to the beach in the shimmering almost evening light, to talk to me there. I am sure that is what he liked most, and so did I. It was easier for me to talk to him there, because of the soothing calm of the sea sounds, and the wind blowing my hair around my head. It distracted me and it made me more open.

This poem, it is me, it is everything I was and everything I am.


About Gilles de la Tourette

Definition: Tourette Syndrome

There it is. Something I most definitely do NOT want to have. Especially since I always related it to coprolalia, the use of inappropriate language.

Because I do NOT do that. I do NOT:
  • Swear
  • Curse
  • Scream

What do I do?


  • I have tics around my mouth 
  • I have tics around my eyes 
  • Throw my head to the back 
  • My hands sort of 'flap'
  • My arms flail, I am often black and blue


I do NOT want this, but they really think I do...

It has of course its fun sides. I look playful and dancing, always ready to jump from that wheelchair to run on stage and dance. This is true and I'd like to do that. I have my poems, and my slam poetry I composed for performers. It is a wish of mine to perform those myself.

Quite a number of my poems have a certain rhythm and cadence, and are created to be performed on stage, with or without music. And I know that when I am singing I do not stutter, isn't that something great? I also throw off my incredibly painful shyness on stage. Don't ask me why, it happens.

So, stuttering, Tourette (or not) and shyness: GO
I will one day stand there and perform
I will flap my hands and they think I will fly away
And that is what I will do. Sing, dance, and fly away, fly away
Far away from reality.

They think I have Tourette.
I sigh and say: IT'S ON! COME AND GET ME!
It's just one more label, there are many labels attached to me. I give them Pride-tags and places of honour.

It is not who I am, what they say I am is not WHO I am.

I am ME
I smile at you and challenge you to interject me
I will inject you with my borderless optimism
Come join me and feel good
I will create a poem for you
One you can dance on
Let's dance together

<3


Wednesday, 3 August 2016

Trafficking

From http://www.dictionary.com/browse/trafficking:

Noun
Illegal commercial trade in human beings for the purpose of exploiting them: the traffic in young children.

Verb (used with object), trafficked, trafficking.
To trade in (human beings) for the purpose of exploitation: He was convicted for trafficking illegal immigrants.


Origin  
Middle French trafique (noun), trafiquer (v.)                      
Italian traffico (noun), trafficare (v.), of disputed orig.     

From: Interpol:

From: Humantraffickingsearch.net: Child sex tourism 

From: AAP Gateway (Pediatric Resources): Child Sex Trafficking and Health Issues
       

***

This is about me, but I cannot talk about me, it is far too hard, and too triggery. It is the reason for my nightmares and daily flashbacks, it is the reason my body and my mind are ruined and I ride a wheelchair. I cannot talk, I cannot talk....

And that is why I am asking you to read as much as you can about the subject yourself, and understand me and children like me a little better.

Thank you
With all my love
Darren

Tuesday, 2 August 2016

SCHOOL

When I was finally awake, and I mean literally FINALLY awake, I found myself in a hospital. In The Netherlands of all places. The last place I remembered being in, was a country far away.

Whole armies of concerned citizens gathered around me for several reasons. Some were there for my mental wellbeing, some were law enforcers, but most of them were there to try and keep me alive, which was no small feat, I can assure you.

There was one issue I disliked most, and that was the 'opening up' issue. A psychiatrist was there, he came every day and did his best to get me to talk. This alone was quite impossible. Not only was I unable to talk, I didn't WANT to talk. I wanted to be left alone. Only he didn't leave me alone, he was there every day and we held this competitive silence together for days, even weeks I think, not sure.

And then he presented me with something that suddenly interested me. He said: "What if we enroll you in school, so you can have a decent education. And in return you start talking to me?". So I wrote to him: "SCHOOL???"
"Yes, school. I am fairly certain that you haven't set foot in any school over the past five years."

He was right. Ever since the trafficking business had started, I had travelled all over the eastern parts of Europe and I had learned a lot, including a few languages, but I had not been to school since I was 10 years old.

I wrote: "I am NOT interested in sitting in class with children half my age". To which to my surprise he started snickering. "NO. I mean we can enroll you in online school, we assess your capabilities and where you lack knowledge and we take it from there."
I (suspiciously): "and what do you want in return?" He: "For you and I to start talking properly."

It took me only a few hours to think about that. I LOVE school, I love learning, I love languages, I said "YES".
From that moment on I spent every minute awake on my education. I sped through the topics I lacked to go to High School. And then I just ran through High School.

I kept my promise and started opening up to that psychiatrist. I don't see him anymore because I am now living someplace else. But I will never forget him because he was inventive, thinking out of the box, and because he offered me the opportunity to start living. Thanks to him I found in myself a spark of life.

Wheels

To us, wheelchair users, there is something strangely appealing to our chair.
At least to me there is.

I like my wheelchair a stylish one, much like myself. I like clothes that match my eye colour, my hair colour, they have to be loose-fitting and eye-catching.
The same goes for my wheelchair. Mine is very very fast, slim, lightweight and agile. Its colours range from blue to purple. It's an eye-catcher.

I am also very possessive and protective of my chair. Often I stay at a place where younger children live, somewhere between the age of 10 and 15. It's not so much a mental facility for children as an all-round care facility, with not only psychiatrists and social workers, but also physio-therapists, doctors and nurses.
I don't live there, but I go there for therapy in all its forms.

Nine times out of ten, my wheelchair is gone when I am finally done with therapy. There is always the same little group of vandals stealing it. And they race with it. And unfortunately they have seen me race down the stairs with it.
And of course they want to  try the same. I am not able to run after them, why would I need a wheelchair if I could? Truth be told, I CAN walk a very small distance, really I can, but that does not involve chasing a racing-wheelchair.

When the nursing staff finally manages to return my wheelchair to me, it's always with a disapproving look. As if it is my fault. IT IS, they say, YOU STARTED DOING THAT. And that is true. I am the one who invented wheelchair racing here, but that was a few years ago, when I was still living here. Apparently once a villain, always a villain.

You can roughly divide wheelchair thieves into two categories:
- the racing kind, the ones who love speed and competition
- the stylists, who sit in the chair, sighingly caressing it's beautifully coloured frame.

I am somewhere in the middle of that spectrum. I do both. And that's exactly what I am everywhere. I can't seem to choose ANYTHING.
Will I be a scholar, or a writer?
Will I be the linguïst, or in the end choose for the PhD in Arabic?
Will I be a real gay, or will I be fluid till I melt away?
Will I learn to speak properly and fluently, or just give in and finally do that course in sign-language?
Will I force myself to learn to walk again, or will I pledge myself to wheelchair-racing?

Will I? Will I?

I have no idea, the future is quite open and colourful, like I am, like my wheelchair is. We are quite the pair and we are fond of each other.

Monday, 1 August 2016

Speech




"That's right, stupid little voice, bash all my hopes and dreams. Shut up and tell me how to start a conversation with someone who doesn't speak."
- Cody Kennedy "Ómorphi"

***

To me, speech is this:
  • Strange
  • Frustrating
  • Incomprehensible
  • Problematic
  • Amazing
  • Annoying

Since my earliest years I have been stuttering to the extreme. And stuttering to me is only now and then hanging on a letter, or a syllable. No, it is more this: Starting a word, or a thought, and not being able to continue. Which means that the person I am talking to is presented with someone who is utterly silent, while at the same time looking at him/her intently and desperately.
And to accompany this, I have tics. Which means my face is contorted while I am trying to speak, and I involuntarily twitch my arms. (I have Tourette's Syndrome but that's a whole new observation and we'll leave that for now).

I grew up in an extremely violent and abusive environment, where failure was not allowed. And failure included failing to speak. Therefore I was punished beyond belief and I became silent, unable to speak. At school bullying for this reason, for the tics and more (me being gay) was extreme, and I withdrew even more.

I created my own fictive safe place and stayed there as long as I wanted/needed.

I have been speaking over the past years. I had speech therapy and learned to communicate. Especially with friends and while talking about safe subjects it has even been easy. Although never as easy as they may think.

The weirdest thing happened a while ago. Because of the abuse I suffered, my throat, and especially my larynx and vocal chords were damaged. My vocal chords were repaired and I, once again, am back at having speech therapy. This is one frustrating journey! Why?
To be able to speak properly, I have to think now. And while I think, I tend to OVERTHINK. As a result I am back to my childhood stuttering... almost. With strangers I cannot speak anymore and have started to write again, on a notepad, with a pencil.

To people I know I can speak face to face, as long as it is a safe and familiar subject, and as long as it is only one person at a time. Groups (two or more) are a no-no.
I have two friends with whom I Skype. Jody and Ahmad (my love :).
I think they can testify about the strange ways stuttering comes and goes.

Ahmad had the most funny and annoying observation here. Once I shared my Skype screen with him while I was playing my favorite MMORPG: SW:TOR. While he watched me play, I explained what I was doing. All the while I SPOKE, really SPOKE. Which means that when my mind is distracted, this whole issue is a non-issue.
Ahmad also observes that when I am talking to him about abuse, this stuttering becomes bad to the point that I go back to typing in Facebook Messenger or IRC.
And then HE is my closest and dearest friend.

Which makes me wonder: will there ever be a time where I speak freely, even about the most horrible subjects? I tend to think not. Will I be able to get used to it? I now think I will. I am slowly getting more confident. Not only about speech, but about everything that is me. Stuttering; twitching; gay; totally non-binary; effeminate; not-sure-what gender; wheelchair.

I am me!
I hope you all can accept me the way I am, while I do my best to accept myself and discover me.
Love you all!

Darren <3