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.
by: Raya AlJadir (@Carelessrayoon), World Enabled Research Fellow
It is funny how when you fear and dread something so much that the anticipation and wait are actually worse than the experience, so when New Year’s Eve finally arrived it was in fact just a normal and ordinary day. I am not sure if mum just hid her emotions or as the old cliché goes ‘time is a great healer’. Don’t misunderstand me Dunia, a mother will never ever get over losing her son but God has bestowed on mum incredible amount of patience and tremendous strength that enabled her to carry on, and I think she has come to the realisation that the pain will be there regardless of the actual day.
It was just mum and I; my siblings did not come home for the holiday and our live-in help took a break too and travelled to Europe, there was nothing significant about the day just watching people celebrate on TV, which I don’t quite understand. I mean it is just a day that marks the end of one year and the beginning of another, but the world does not change, it will be the same as it was if not worse, so why get excited? Or better put, should we not feel that excited at the end of each day, week or even month for a ‘new start’. In my opinion, it does not require a change of year or date but a change within your own self. We should be in control of our own destiny and not wait for a ‘date’ to kick-start that change, positive development will not fall from the sky onto your lap; we must dream, aspire to achieve that dream and work hard at it withstanding all the obstacles and difficult times that will no doubt obstruct our path.
These were my thoughts as I was staring at my laptop screen, reading about the extravagant celebrations some countries have planned, while simultaneously, reading about the disastrous conflict that other countries are experiencing. Reminding me how during my family’s darkest hour the world was celebrating and dancing, such contradiction makes you realise this world is strange and not worth getting obsessed with all its features. That was my conclusion just before my carer phoned me at 9pm to say whether she can come early tonight as it is New Year’s eve. Realistically did I have much choice in the matter? I mean, I could not have said no I want to stay up tonight, because I don’t have another person to help me at night, so I said sure come at anytime, I wasn’t planning anything exciting anyhow, and to be honest I wanted this day to end before memories of 20 years ago start to fill my head.
Sleep is such a blessing to people who are deprived of it, I know you won’t understand me fully Dunia, even I would not have understood that sentence years ago, I used to hate sleep and regarded it as a waste of valuable time but now physical pain does not let me have a full night sleep. I wake up 4 to 6 times needing to turn over to the other side, or change position, or adjust my ventilator, etc. Sleep is truly a luxury I never realised the value of. I longed to sleep before my brain began recalling and analysing things, I did not want to be awake when the clocks rang at midnight I needed to escape and did not want to be part of this current world. I had made the decision to create my own world a while back when I ‘found’ you Dunia and I must carry on my mission. I will sleep now I bet you are wondering how I can still type in bed well I am using my phone then I will transfer it to my laptop tomorrow. Good night Dunia and 2015.