Hi! My name is Nadeera. And this is my story!
I was born with a rare genetical disorder called Osteogenesis Imperfecta (OI). It is commonly known as Brittle Bone Disease. There are many types of OI but I have the most severe form of it. My parents got me after 10 years of marriage and therefore, I was so called a ‘precious child’. ‘A gift from God’ they called me. I am not sure if that’s still true now though. Haha! 😋 When I was born, I had some complications. I was born with multiple fractures throughout my body (some fractures had already healed in my mother’s womb itself). But the X-ray basically showed this whole messed up structure. As if someone had beaten me up into pieces. Besides that, my lungs were also underdeveloped and thus, I had some serious respiratory problems. I was in the ICU, in the incubator, for 22 days, before the doctors told my parents they could take me home. But they did not just send me home. They sent me home telling my parents something that they will never ever forget till today. What did they say? They said, ‘just take her home, make her feel comfortable, and let her go’. “LET HER GO” they said. Just imagine for a brief moment, the grief that they would have experienced upon hearing this. Their heart was heavy with so much of worry not knowing what to expect, not knowing if I’d live another day. But they just prayed and left everything to the Will of God. They decided to let God do what is best for me. They told themselves, if He thinks I should leave this world, then so be it. But as long as I was still alive, they would love me and care for me to the very best of their abilities. They took it one step at a time. Every single day was precious. In the meantime, they had to learn how to care for me (considering how brittle I was). For instance, I had to be carried with a pillow kept just underneath my head because my skull was still too soft to support any hard surfaces. To lessen the cries and the excruciating pain I was going through, my mother used to wrap me around with a piece of cloth really tightly so I wouldn’t be able to move and cause more pain to myself. Those were some of the self-taught things they were forced to learn as the days went by. Another doctor later told my parents that the maximum age I would live is till the age of 5. ‘But hello!!! I’m 25 now!!! And still very much alive. Thanks a lot for scaring my parents, doctor.’ 🙄
Another term used to describe me in recent years was ‘Glass Doll’. I burst into fits of laughter upon hearing this for the very first time. But why ‘Glass Doll’ though? Well, just imagine what would happen to a doll made of glass when you drop it. It will break correct? So that is what will basically happen to me if I have a fall or a hard knock. Of course, I won’t literally shatter into pieces (OMG.. Where’s Nadeera she’s broken into pieces, OMG we can’t find her…) Haha NO of course not! But it’s just a metaphorical term used to give you an idea of how brittle my bones truly are and how careful I have to be in my daily movements. Even sneezing or coughing can lead to a bad sprain and affect me on a long term basis.
Throughout my life thus far, I’ve had about a few minor fractures and two major ones which I can remember very vividly. When I have an episode of fracture (usually in my legs), I will end up being bed ridden and out of school for a few months as recovery takes longer than usual for me. That being said, due to the fact of being extra cautious and careful, the number of fractures I’ve had can be said to be a lot lesser as compared to some of the other OI patients in general.
Furthermore, besides fractures, I had to make numerous hospital visits throughout my younger days due to the respiratory issues I had had to endure. A slight cough and cold would eventually get me admitted in the hospital. This would happen quite frequently (at least twice a month). I eventually became a popular figure amongst the doctors and nurses there. During their break time, the nurses would come crowding around my bed to have a chat with me. I found that quite interesting to be honest, since I LOVEDDD… to talk. Lol! I was known as a chatterbox by all those who knew me. People would actually plead me to stop talking. ‘Nadeera, can you please just stop talking for five minutes’ they’ll say. ‘Just FIVE minutes’. But I would not even last a minute. Haha! My mother said I started talking from the time I was 9 months old and haven’t stopped ever since 😂 I suppose that is one of the greatest gift God has given me. The Gift of Speech!
Aside from this, I am a believer of the Baha’i Faith and ever since I was a baby, my mother always exposed me to the words of God. Instead of the usual nursery rhymes, she taught me lots of prayers and Holy Writings from my Faith. She felt there was a greater need to instill the words of God in me to give me the strength and will and courage to go on. Plus, nursery rhymes will eventually be taught in kindergarten or school anyway. Due to a worry of me getting injured, I only went to Kindergarten for one year. At the age of 6. The final year! But I managed to catch up very quickly and become the first in class at the end of that very year. Apparently, I was rather bright back then and could catch up really fast even when my mom taught me at home. 😂😜 Meanwhile, my mother always took me out to shopping malls and people’s houses and so on. My parents never shunned me away from the outside world. I have had external exposure from the time I was a baby and therefore, got very used to to the various reactions and comments from the public. Some of the comments and expressions I received just got me rolling on the floor laughing. One example was ‘Hey, this thing can talk la’. In my mind, I would be like ‘Duh, this “thing” can talk. Thank you very much for pointing that out. Good observation.’ Haha! People would also stare at me as if they had just seen an alien from outer space. Like this – 😳. I was afraid that their eyeballs may literally fall out. Lol! And the funny thing is, they were totally oblivious of the fact that I was right there and can actually see their faces. At first, I did not understand why this was happening as I did not really see the difference between myself and the others as a young, naive, and innocent little girl. But then I grew to learn I was indeed different. ‘You are special’ my parents would tell me. ‘Just smile at them when they look at you’ my mother said. So that’s what I did. I eventually wasn’t in the least bit bothered about what people thought of me and whether they returned my smile with another smile or not. I just kept on smiling and haven’t stopped smiling ever since. 😊
Then, it was time for school. My parents had to go school hunting. They went to the Ministry of Education to seek their advice on where to place me. The Ministry were rather lost themselves. Because I did not belong to the category of the mentally challenged but neither was I perfectly ‘normal’. It was just the physical challenges that were an issue. But unfortunately, there was not a single government school in the whole of Johor Bahru (which was where I was residing during that time) that catered for the physically challenged and my parents most definitely could not afford a private or an international school. My mum then said ‘My child needs an education for sure, there is no buts about it, just tell me what it is I have to do to get her into a school’. After much deliberation, they said I could go to school but only on one condition. They said my mother would have to be there in school full time and that they are not going to bear any responsibilities of caring for me. Determined to provide me the education I needed, my mother agreed to this and hence spent the next 11 years accompanying me to school EVERY SINGLE DAY. Looking at her will power and determination to provide the best for me, I knew then that the least I could do is to do my part and give her my best in return. Of course, it wasn’t easy. Sitting for long hours caused tremendous amounts of aches and pains throughout my body. Over exertion caused me to fall sick every now and then as well, due to my weak and compressed lungs. In school, teachers were very supportive and understanding in general but my peers did not like this. They did not like the fact that I tended to get all the attention. They did not like the fact that my mother was in the school grounds all the time. They hated the fact that the teachers used me as an example to the class and school. But what they did not know was, I did not enjoy that myself. I appreciated the encouragement but honestly, all I wanted was to be seen as a ‘normal’ human being, just like everyone else. However, I guess it is human nature for one to compare themselves with another and most government schools in Malaysia (if not all) often encouraged this comparison system as well. Not sure if that is a good thing or a bad thing on the whole but this worsened my situation and caused more barriers between my schoolmates and I. And about my mother being there, I would have certainly not wanted that either if I had any other choice. Sadly, my schoolmates were too blind to see the bigger picture. My classmates and extended schoolmates started to have a great deal of envy and jealousy towards me. They would backstab and backbite about me all the time. Did that hurt? Oh yes! It sure did hurt a great deal. Although a part of me told me not to care and said it was their loss and not mine, I still felt everybody around me was fake and pretentious. Although there were some who were sincerely nice to me, I was still very cautious towards them and hardly opened up to any of them. I had sort of built this wall in front of me and said that ‘this is as far as you can get, now stay there’. Haha! I suppose this was due to the insecurities that had been instilled in me by these other ‘fake friends’ of mine. I started to have this common assumption that nobody was honest. This went on for some time especially throughout secondary school.
Being a teenager made it a lot harder as well, considering all the hormonal changes that would normally take place during that transitional period from adolescence to adulthood. To the outside world, I was this happy go lucky, carefree, jovial teenage girl but in reality, I was this angry, rebellious, and troubled teenage kid deep inside. I pity my parents and what they had to put up with back then. 🤣🙈
There were many a times where I would say ‘I can’t take this anymore, I have had enough’ etc. and even pleaded God to take me away from this world. Nevertheless, I would pull myself together again and come to a realization that if I am still here, then my purpose in this world has not been fulfilled just yet and hence, I have no right to cut that life short before God decides the perfect time for me. Also, my mother’s sacrifices kept me going. Each time I was on the verge of giving up, I would think of her and how much she has sacrificed for me. I would think about my father and how much of hope he had towards me and how hard he worked to make ends meet for our family. And I sure as hell did not want to let them down. I kept telling myself that they have done so much for me and have showered me with so much of love and care so the least I could do is keep moving forward. So I did.
Eventually, I completed school, managed to get 7As and 2Bs in my SPM and obtain an award for being the best OKU student in the whole State of Johor. I was like ‘Um, okay.. Great! Wonderful! Now what next?’ Haha. I knew I needed to obtain a scholarship to pursue my studies. That was next. So I applied and applied and applied for several scholarships but got rejected over and over again. Along this period of time, I remember going ‘What is the point of obtaining an award? What has it gotten me? Nothing! Just some LAME piece of paper saying I’m ‘so called’ brilliant. Nothing else! How am I going to be an encouragement to others who have a similar predicament like myself?’. All these negative questions started constantly popping up into my head. Despite being rejected, I somehow found my way to The University of Nottingham Malaysia Campus and decided to go ahead and enroll myself there after coming to know of its excellent facilities for the physically challenged. I started my Foundation in Arts there but continued to apply for scholarships. I even applied for the JPA scholarship twice but to no avail. Then I did something not many people would have done. I wrote an appeal letter to our current Prime Minister, Dato’ Najib Tun Razak, explaining my situation and appealing for a scholarship. His secretary had then forwarded this letter of mine to JPA instructing them to offer me a scholarship. I then received funding for the final semester of my foundation programme. However, JPA did not allow me to continue having this scholarship despite the fact that the agreement said it should cover my full degree. JPA had put certain terms and conditions. One of which was that I will not be able to pursue a degree in Psychology in The University of Nottingham. They claimed that Psychology was an ‘unrecognized’ course in Nottingham and therefore advised me to go to UCSI or any other local university. In Nottingham, only Business courses were sponsored by JPA. Business was totally not my thing and I knew for a fact that I will not be happy doing it. My parents and I spoke about this and thought that going out of Nottingham would definitely not be a good option for me. Nottingham was a place where I had finally found my freedom. Nottingham was a place where I first got to breathe the air of independence. Nottingham was a place where my mother could finally let me be free not having to worry about me and not having to do things for me anymore. Thus, we felt that it would be totally insane to leave that circle of freedom and go back to square one all over again. My mother wasn’t getting any younger either. Hence, we just let it be and left the rest to God. My parents told me not to worry about finance and just concentrate on my studies. And that’s what I did. We still tried for some scholarships in the following year but were turned down again.
Then one day, I was chatting with this friend of mine from school by the name of Ilham, and I was telling her about my unsuccessful scholarship applications and she mentioned her similar story and how her applications had finally turned into a success. She told me of her story of how Sime Darby had given her a scholarship to pursue her studies in the UK and advised me to give it a try as well. She was so encouraging, telling me ‘It is okay if the deadline has passed, just give it a try’. ‘They give bursaries for students with special needs as well so just give it a shot and I’ll put in a word for you as well’ she told me. So I decided to give it one last shot. I sent in my application with a positive attitude but not having too much of high hopes at the same time. After a long pause, Sime Darby eventually called me for an interview for the Yayasan Sime Darby Special Needs Bursary and I went, gave my absolute best and received a call the very next day saying I had received this fund. It was a success. All those failures had finally led to a SUCCESS. That was truly a great relief for me and for my parents. Although it was only just for one year (the final year of my undergraduate degree), it was truly a great relief of burden for my mum and dad. I then went on to complete my BSc (Hons) Psychology and FINALLY obtained that scroll I had been longing for, on the day of my graduation. It was a long, arduous struggle to get to this point but with God’s grace and mercy and the loving support of my parents, family and friends, I managed to pull through. Now, my main focus has been to obtain a job in the line I am most passionate about (mental health) and hopefully fulfill my greatest wish of all – which is to give back to society in any way possible. ☺️
SPM – Sijil Pelajaran Malaysia (Malaysian Certificate of Education)
OKU – Orang Kurang Upaya (Persons With Disabilities)
JPA – Jabatan Perkhidmatan Awam (Public Sevices Department of Malaysia)