Those Words

All those words that brought me down

Are the words that picked me up

All those words that burnt my skin

Are the words that sparked my heart

All those words that cut deep in my mind

Are the words that healed my soul

All those words that suffocated my dreams

Are the words that built my goals

Are the words that lit a burning desire

A desire to be bigger than those words

Dunia: Differently Different

Dunia is the weekly private journal of a girl born with disability, who uses a wheelchair and a respiratory ventilator machine yet is no different to any other person, read about her struggle, tribulation as she strives to seek independence. The character and events of the journal are pure fiction and bear no relation to anyone.

raya4new

Alright so it may seem like you are my ‘moaning bank’ Dunia, and all I ever do is complain to you but I think that’s is the main point of keeping a diary/journal; to off load all your negative feelings rather than bottle everything inside you. I guess Dunia you are like a psychologist! Haha, a more practical, accessible and cheap one to seek regularly and whenever I want.   Sorry not in an affectionate mood today, a mixture of anger and frustration has zapped all the nice emotions out of me, but I know you will understand and in reality there is no need for explanations or apologies, right? You are my confidante after all, so you will get my points no matter how complex they may seem. Where do I start? Right, the trip to the London Zoo with my niece and nephew.

The annual traditional visit to the zoo with the children during the summer holiday has no major significance except this extreme joy that can’t be contained inside me, at spending time with my favourite people on earth and at the same time teaching them new set of information.  The great thing about the Zoo is that it has so many animals that people refrain from staring at me as they are distracted by other things.

Well, that was the case until we passed some people who I discovered were Arabs when they started uttering the usual sentence of  ‘AllhamedAllah (thank god) we were spared this person’s suffering, we are so blessed yet don’t realise’. Hmm, ok I am all for gratitude and appreciating our situation no matter what it is but seriously is there a need to be so vocal and loud about it?? Thank God of course but silently, in your heart – I am sure you will be heard by God regardless. Plus can’t these people see the contradiction in their act; if you are trying to be pious and content then no need to hurt the feeling of the person that you see as ‘inferior’ to you!!

Don’t get me wrong Dunia I really don’t let things like that get to me, I have had a lifetime of it to the extent that I usually anticipate it happening and when it does I laugh in the knowledge that I am glad to be put on earth for people to realise how blessed they are, at least I have some kind of use! But this particular time I was annoyed as I don’t want my little niece and nephew to witness this; they are too innocent to see this side of human nature and they look up to me especially my niece who regards me as her role model, someone she aspires to be like and follow. To hear others claiming that they are better than me because they are blessed and chosen by God made her upset and she questioned why should they say such a thing? And is it true they are more blessed than me and if so why? Did I do something bad?

So many questions that I was not prepared for, mainly because I don’t want my beloved niece exposed to the ugly side of this world. I opted to say that we are all blessed and we are all happy with what we have and that is the right way, which is why we don’t want to be in other people’s place. I reassured her that her aunt is differently different from the rest of the world and that is a very good thing as she can always find me for I am like no other.

Oh my carer is here to take me to bed, but I still have so much to write, guess what Dunia, I am going to be home alone for a whole week! Sorry I have to go as my carer is getting impatient will fill you with all the details next time. G’Night!

Dunia: Justice and Equality

Dunia is the weekly private journal of a girl born with disability, who uses a wheelchair and a respiratory ventilator machine yet is no different to any other person, read about her struggle, tribulation as she strives to seek independence. The character and events of the journal are pure fiction and bear no relation to anyone.

raya4new

Well Dunia here we are again, I did not think that I would actually return – no offense but I am not good with commitments yet at the same time I guess it is a reassuring thought that you can escape the external world at a click of a ‘mouse’ button.

It has been a strange week, a mixture of good, bad and weird. It started with me being slightly ill, well, I got an infection on a pressure sore wound that I have on my elbow (long story but it is chronic and will never be cured as long as I use my arm) so I am on a course of antibiotic for two weeks and have to use new dressing for the wound and had to go to hospital to have the elbow looked at by a so called ‘best’ doctor in the field. I fail to understand how hospitals and health profession lack the basic care elements; first, I was ignored by the receptionists who chose to ignore me and direct their questions to my carer, as though I am an invisible creature. Then the doctor just did not seem that interested in my wound, in fact he asked me “why do we see you here if we can’t operate on the wound?” I gave him a puzzled look then said “as you might have read from my medical notes I can’t have any form of surgery due to respiratory complications and I am seen regularly to keep a close eye on the wound”. That kept him quiet. Not that I came out from the hospital with anything but an appointment to be seen again in a year. Useful right? How weird that people all over the world travel to London for medical attention, I wonder if they have similar experiences.

Having the infected wound made things more difficult but I was determined not to let it ruin the last few weeks of my niece and nephew stay with us in London, I love these children more than anything; they are the source of joy, love and hope. Whenever I feel at a loss or come close to giving up I remind myself of these two precious creatures that regard me as their best friend and their reliable buddy.

I put my pain aside and we went to the Natural History Museum where the children got to see the big dinosaur zone, in contrast to my hospital visit, the museum staff were a world apart to the medical ones; friendly, polite and helpful.  I also witnessed a positive type of discrimination where I did not have to queue to enter the museum or to see the dinosaur just because I am disabled and a wheelchair user, this irritated my 9 years old niece who voiced her concern that ‘it is not fair just because you are on a wheelchair you were allowed to pass all those people that had been waiting for ages’. I smiled and explained that being disabled you are restricted by time as you need to return for your carer’s arrival, plus you experience more pain and discomfort as sitting for long time will cause that. I looked at my niece and was reassured by her beautiful and caring smile that yes it makes sense and discrimination is not always bad.

You know Dunia, I have come to the conclusion that life is fair but the world isn’t. Do you get what I mean? We are given what is best for us, what we as individuals can tolerate, but the world or rather its inhabitants tarnish the fairness of life. I really need to stop now as the elbow is in so much pain I can no longer type…

Within The Withered Flowers

All by my lonesome

Nobody around

Away from danger

Safe and sound

 

Always in my room

I do not leave

Pursue not my goal

I do not achieve

 

A loner’s life

Is void of joy

Emotions I had

Computers destroy

 

Never fulfill

My hearts desires

Never could I

Make them transpire

 

A grandfather clock

I hear its chime

Wasting my life

Losing my time

 

To change ones self

Leave old habits

To change ones self

Create new status

 

Reflection of a mirror

What do I see?

An image of potential

Half the man I could be

 

To start anew

Chase a dream

Difficult it is

Not easy as it seems

 

A new journey begins

A tale unfolds

This story of mine

Begs to be told

 

This thorny road

Leads to salvation

To reach my goals

And avoid starvation

 

Within the withered flowers

A garden of gloom

A rose stands tall

It prospers and blooms

 

Without darkness

There is no light

Outside the tunnel

The world is bright

Over My Shoulder

Looking over my shoulder

Every night I can’t rest my eyes

Afraid to dream

Afraid for this reality to fade

To become a distant memory

So I lay awake

Hoping to hold on a little longer

Hoping for this reality to get stronger

Hoping to take over

The dark past that used to haunt over

That used to make nights darker

That heart of mine so much weaker

So I keep looking over my shoulder

Just a boy

He was just a boy when they took it away

They took his confidence and tore it away

It made him weaker by the day

Those cruel words went a long way

It was constantly stuck on replay

It all just slowly ate away

It took over his nature and shaped his way

Till there was no character left to display

It turned him into the man he is today

A cold hearted soul covered in grey

If only he could have walked away

He was just a boy on that day

Dunia: Un-Belonging

Dunia is the weekly private journal of a girl born with disability, who uses a wheelchair and a respiratory ventilator machine yet is no different to any other person, read about her struggle, tribulation as she strives to seek independence. The character and events of the journal are pure fiction and bear no relation to anyone.

raya4new

So now that I found a name for you what comes next? You see Dunia I am very new to this personal writing and honestly, I’m not quite sure why I am doing it. For years I have gone with the flow, taken each day as it comes, letting things go to please people and allowing others to control me. I have never felt I can fully open my heart to anyone, fearing that I would upset them, or knowing that they could not understand me. And I am not sure I trust them enough either. I don’t like being judged or misunderstood; yes, I know, who does? I just rather have a quiet and peaceful life.

I will not introduce myself to you but hopefully you shall slowly discover who I am, that will be easier as I doubt anyone is able to fully portray themselves. Name and age are irrelevant information in my view; they are just labels that society likes us to have to ease the process of categorisation that every human falls prey to. I have come to realise that age is just a number that seems to dictate what a person should be doing – Well not me, as in the eyes of others I am merely an undeveloped child (untrue, my body does the things female bodies do), a weak soul that needs guidance and protection. Is it because I am a woman in a male dominated world? Or a Muslim in a largely secular country? Or an Arab in a non-Arab country?  Or quite simply because I am person living with disability? I don’t know the answer, although I have tried to figure it out in my head many times; all I know is that I have a deep feeling of un-belonging. I remember years ago during my undergraduate seminars at university, I came across a quote from Toni Morrison’s ‘Beloved’ where she says ‘there is no weaker voice than a black illiterate woman.’  Well, I am not sure if I agree with Ms Morrison. Has she ever tried seeing life through the eyes of others? How can she make such a judgement? Reading that made me so irritated that it put me off the book completely. I am not saying I have it tougher, but being educated does not guarantee you a ‘voice’; it is much more complex than that.

It was Eid couple of weeks ago, not the most exciting thing in London, Eid represent nothing more than the end of Ramadan, it lacks everything that I once knew of Eid as a child, maybe as you grow older the things that once made you happy fail to do so again, or possibly the experience of Eid in the west is quite different to the East, or it could just simply be that Eid is for children. I did not do anything special but the reason I am mentioning it was this comic incident, I got asked by a girl I met recently as to how ‘disabled people celebrate Eid?’ Hmmmmm! I did not know what to say or how to reply, all I managed to do is burst into discreet laughter!! I wanted to say that I along my alien friends do wheel spins on planet Mars. Hahaha! Yes, I am mean and sarcastic but not rude.

Dunia, I am tired now from typing, so I will bid you adieu.

Dunia: The Great Escape

Dunia is the private weekly journal of a girl born with disability, who uses a wheelchair and a respiratory ventilator machine yet is no different to any other person, read about her struggle, tribulation as she strives to seek independence. The character and events of the journal are pure fiction and bear no relation to anyone.

raya4new

Dear Diary,

Oh… nope… this won’t do. Let me start again.

Dear… hmmm… who? I always used to read novels in which the protagonist would keep a diary and would address it as such-‘Dear Diary’.  But that to me seems so impersonal and cold, a bit like our society, which I want to escape through this venture of personal writing. I have never thought about keeping a diary or even writing my private thoughts for a few reasons; if you write something it becomes more real, and I have always tried to retreat into my imaginary world which offered me protection and hope. Plus, I often think, ‘What would I write?’  My life lacks the excitement I read about in books; it is rather simple and routine-based. So what would I write? The most important thing for me is my physical ability (not great).  I rely on my mother, family, helpers and carers to bring things to me and store them back on shelves, drawers, cupboards, etc. So how can I trust anyone with my diary that has deep thoughts and emotions that I want to keep to myself? Human curiosity can’t be contained no matter how good and honest is the person; isn’t it natural to be intrigued by very personal writing, especially if it is written by someone you have come to consider to be your ‘private property’!

But suddenly, I realised why I am obsessed with how things are supposed to be done; yes, stories (and maybe history?) give us a very romanticised idea of diaries. But mine should be real and reflective of me. The laptop diary! That is the perfect solution, word document rather than pretty little rectangular shape book with lock on the side, instead of the cute key lock I will have a password that no one will know. Yes, it is different but that is me, I always have to find alternative ways to experience what many others take for granted.

Ah, I forgot to mention that I was born with physical disability. I mentioned it in passing before without divulging into details, but is it such an important piece of information? Does it make a difference and should you, my ‘diary’, know that? Maybe not, as I have only just ‘met’ you. Argh!!!  I still haven’t figured out a name for you, I don’t feel comfortable with ‘diary’ – it’s like seeing a person and referring to it as human all the time without personification. You will be my soul mate, so let me introduce my other soul mates alongside you: well there is Wheelie, my electric wheelchair. She is very kind and quite a free soul; then there is also Nippy, my ventilator – she is super special. I always feel safe when she is around and gives me real feelings of strength and protection. She is like the cuddly toy people take to bed with them. Nippy, I use at night as soon as I am in bed until I get up in the morning. It helps me breathe as my lung muscles are super forgetful (not to mention lazy), so when I sleep or if I exert energy they get tired and almost go on strike, but then Nippy comes and pumps air into them and makes them work.

Let me think – who else must you know about? Laptop, ipod and mobile phone are my best friends too, and then we have little collection of cuddly dolls/figures. So now you have met my worldly goods we can…WAIT! I have found the perfect name for you. ‘Dunia’! ‘Dear Dunia’ sounds so perfect!  ‘Dunia’ means ‘the world’ in Arabic, Urdu, Farsi and several other languages. So you will become my exclusive world that no one else will enter without my approval, my Dunia.