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“You have to give a speech.”

First of all, I have anxiety.

And you know people think anxiety is a joke. This thing is real. I mean how do you explain how I poured myself hot water instead of tea for breakfast, how I almost served my brother with hot chilli instead of stew, how I made my entire family search for my lost cash that was just in my wallet even though I had rechecked almost ten times for the same money. Miscalculations, don’t blame me. Anxiety makes me forget passwords. On this day, somehow my watch was even one hour ahead which had me up and in town one hour earlier. I call two friends, my best friend tells me, ‘Woman relax. It’s not yet time.’ and another says,’Are you the one putting up the tents?’ All that for just a speech. Thank God I wasn’t born in a war-torn zone. We all know how that would have gone down.

For me, giving a speech is like making me in-charge of setting out a drone. It is pushing me off the cliff. It is asking me to confront a terrorist which in this case would be my anxiety. My best friend says I have to get out of my comfort zone. So I did give the speech after all. It was hilarious; okay maybe not exactly but I ashamed myself by breaking down in front of the tired crowd who had just returned from the ‘world Polio Day’ walk. I could hear them clapping for me perhaps pitying this small human in front of them or perhaps some could understand what it means to have your book published. I didn’t invite anyone because I wasn’t sure how friendly my anxiety would be that day. So y’all please save me the blame 🙂


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Nine years ago, at the age of fourteen when I started writing my first small book, I never thought this day would come. It has been a very long journey of repeated failure on my writing career. It was filled with criticisms and ‘not good enough’ statements over and over again. So when Nafisa (God bless her soul for this) trusted my ability and allowed me to write her story, I was moved. Of course it wasn’t the first book I expected to publish and perhaps its not my best work yet, it is a milestone for me alhamdulilah. And I keep sharing bits of my story on failure and triumph so that no one could ever think that achieving goals was ever going to be easy. Sometimes you’ll be pushed out of your comfort zone and you somehow have to learn how to do it well enough.

I wouldn’t be here hadn’t it been for God’s grace, for my own persistence, for the tremendous support from my family especially, from my close friends, for mama two; my mentor (may Allah rest her soul in peace), those who helped me a lot editing the pieces and all the readers who give me a reason to write every other day. This is me admitting that I am not yet where I want to be and that I won’t stop here. That i’ll keep pushing myself to face my fears and tackle them. Better things to come in shaa Allah.

I’ll also like to thank Mayfair Bank for sponsoring the publishing of the book.

To reserve your copy kindly contact me at: 0704 731 560. The book goes at 700. For those who want to know what the book is about, kindly search here in the blog for Unbroken Wings; the first three chapters are available. I will also appreciate any opinions and positive criticisms on the book once you’ve had your copy.

God bless you.

I present to you: Unbroken Wings


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CHAPTER THREE

Photo Courtesy: http://www.terapeak.com/

Continuation from chapter two: http://lubnah.me.ke/spreading-the-wings-chapter-2/

 

“Being born in an Asian society with disability has a stigma of its own and discrimination. This was the situation before Dear Diary was born.

After having struggled to live up to everyone’s expectations, having adjusted to all kinds of situations environmentally and also the attitude of people taking me for granted, always keeping the disabled on the side, not including them in the community in any kind of decision making, is what gave birth to Dear Diary.

Down the line after 10 years I am glad that the way people look at me now is different from 10 years ago. Now I am considered part of the society. It wasn’t easy to build a name to keep up to, the pace to keep a smile and keep going, but I have proved my stand. Today I am respected. People want to be associated with me. People want to support me in all that I do purely for humanity and this is a great achievement.

However there is still discrimination where marriage is concerned. People especially in the Asian society have a mindset that a person with disability should not fall in love or have a partner whereas the same disabled person can be part of everything else in the society.

So it makes me wonder why a man or a woman with disability in the Asian society or culture is considered to be not in need of love or to be loved by that special someone…” Nafisa Khanbhai


We have probably seen so many disabled people in our lives; on the streets, in our work places, in our homes and in our communities. As much as they could be outstanding, hardworking, beautiful, strong…there would always be a ‘but’ in the middle of the sentence.

“She is capable and talented to do the job, but she doesn’t have legs…”

“He has outstanding qualifications, but he is deaf…”

“She is beautiful, she would have made a wonderful wife and mother, but…”

The ‘buts’ could go on and on forever and this is because we no longer look at them as normal human beings as what we are. But this is the funny part of life right? Someone ‘normal’ could be so depressed, with so much on their plate, their hearts could be tearing apart, they can barely focus and think straight, yet we still give them the chance to work, to get married, to have a family and a social life, because ‘everyone deserves a chance to prove what they are really capable of.’ Then why can’t we offer the same opportunities to those who are disabled yet still can do what any other normal person can do?

I can’t totally deny that there are some disabled people who can’t do some things because it is simply beyond their power, beyond their abilities and capabilities but there are those who have stood out from the crowd. They are always there but they end up seating on the pavements of the road, begging. Sometimes it is because this is the easiest way out of their troubles but sometimes, they really have no other way except this. And this is because you have stigmatized them; we have.

Have you ever seen the fuss we make when someone gets married or marries a blind girl, or an albino, or a man with no legs, or a lady who is both deaf and dumb? We make it seem like they are aliens, they belong to a world that is close to ours but not exactly the same as ours. Why then don’t we exaggerate the same way when someone marries a totally distorted soul? A soul that is crying out for help? Is it because they are beautiful on the outside or that they are good at covering their pain with a lovely smile?

I am not saying that people with depression issues don’t deserve to be married or be employed or be happy in their lives because anyway, we are all victims of the pain in our hearts. We just endure it differently. But my point is, if we can accept ourselves with all our unseen imperfections and flaws, why then not accept those whose flaws are visible and can be seen?

Mrs Fatema narrates of how once a visitor came home and found Nafisa in a bad state and she quickly told her that maybe someone did some witchcraft or something of the sort to Nafisa. But Nafisa’s mother is a believer that God tests anyone in any way, and this was their test.

The stigma is there everywhere. People believing that disabled people are cursed or victims of witchcraft or a punishment from God etcetera etcetera so however much they may be friends with them or colleagues, there is still some tension in the air, a gap that is always there to differentiate them; ‘the normal people’ to him/her, ‘the disabled’. There is that fine unseen, yet felt line between these two kinds of people and perhaps this line will exist forever.

Go to supermarkets, Government buildings, malls, Company offices, hospitals, schools, how many actually have ‘disabled-friendly’ environments? Are there any wheelchairs, ramps, sign language translators, brail documents? Ask any disabled person how many times they had to cancel their plans because they can’t climb the stairs? Or that there is no one to communicate to with sign language? How many times have you seen a disabled person board a matatu? Have you seen how hectic it is for them? Are the conductors and drivers patient enough to let them board the vehicle and sit comfortably before rushing off? How many schools are there for the disabled? What is the condition of these schools? Most of the times, they are pathetic and sometimes teachers are the same ones who take advantage of the students’ conditions.

Why do we wait until we have become victims ourselves, or until we fall in love with one of them, or when one of our close friends or family members becomes a disabled, is when we decide to think rationally and humanly about them? These people are most often than not, around us or near us all the time. We just don’t see them or even look at them. We don’t try putting ourselves in their shoes. We never think of how that could be you or me someday. We forget that God has never stopped creating us and that we too could become handicapped at any moment in our lives. And I mean, ANY MOMENT. It could even be right now as you read this…

I am not trying to curse you or anyone else. I am trying to remind you that God can twist your story whenever He wills. You just have to be humble to those less advantaged than you. Try helping out whenever you can to those disabled, even if it is just by granting them your true friendship, loyalty and companionship.

I am just trying to tell you that the next time you see a disabled person, treat them like how you would want someone else to treat you if you were wearing the same shoes…


To be continued…stay tuned 🙂

CHAPTER ONE

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PROLOGUE

I have met several disabled people in my life; people with a physical flaw, with a scar, with something on them that they are forever going to see when they look at the mirror. When our hearts are crumbling into pieces and our insides are no longer a beautiful sight, we still can wear a huge smile and stand in front of the mirror, turn left and right, admire ourselves and totally ignore our hearts that are screaming, ‘HELP!’ This is quite different for someone with a disability. They see what they lack, EVERYDAY. It is not as simple as having bushy eyebrows or cellulite or panda eyes. It is not something you can simply use concealers on or make-up to cover it up. It is something permanent. Something they have to accept and live with. They sometimes dread looking at the mirror or even looking at people, because it just reminds them what they are missing or how life would be different if they had normal hands, or eye-sight, or legs, or normal skin etc. But from the physically disabled that I have met, there are those that have picked themselves up, those who have an aura of confidence, they send off very strong vibes of self-esteem and pride, they shake hands with a firm grip and whenever you are about to pity them, they remind you of how whole they are despite what you see. Nafisa is one of them.

UNBROKEN WINGS

A January baby is usually a gift for the New Year. It’s a symbol of hope; the undying hope for an ageing couple. And when the baby is a girl, the only girl in a family of three children, it’s a special gift. The over-joyed couple named her Nafisa, a Muslim name which means Precious. Delicate. Gem. She is indeed Nafisa; she is the girl who was born with spina bifida. The baby that struggled to survive, and when you are born with spina bifida, you just have two choices. You either become a victim of your own pity as you wither away or you fight through all the odds to bloom. Nafisa chose the latter.


In the heart-warming city of Mombasa-Kenya, on the 22nd of January 1976, at 5 a.m. at Aga Khan Hospital, a tiny baby girl came into this world. Mrs. Fatema held her baby; Nafisa lovingly as the nurses helped her clean up. But they kept pacing in and out of the room restlessly and worry immediately started sinking in Mrs. Fatema’s head, ‘what is wrong?’

Right then, Dr. Varma came into the delivery room with a rather enigmatic face.

“You wanted a baby girl right? God gave you one,” he said as his lips remained tightly sealed.

“Sorry,” he continued as he held Nafisa to check her. Mrs. Fatema looked at him with puzzlement as the fear in her grew. Before she could ask anything, Dr. Varma interrupted her thoughts, “When is your husband coming?”

“Any time from now. Once he is informed that I have delivered then he will come immediately.”

Dr. Varma nodded before leaving the room, leaving Mrs. Fatema drowning in her thoughts.

Just when Nafisa’s father, Mr. Kutubudin, arrived in the hospital he was summoned in the doctor’s office and was informed that Nafisa’s spine was cracked above her hip area and the nose of her spine was outside. Her condition is called spina bifida. She needed a surgery immediately. The consequence of the operation was that either her lower or upper parts of the body would end up numb; with no feels or movement. But to survive, it was crucial that she undergoes the knife. However, there was one other problem; the doctors were unavailable. There had been a railway accident and the critical situation of the patients required the doctors there. This left them with only one other option; that they out-source a surgeon to operate on Nafisa. Out of desperation, Nafisa’s father agreed and signed the required papers.

Nafisa was operated on successfully leaving the lower part of her body affected. She was alive, that was what mattered most to her parents and for the years to come, they ensured that Nafisa wouldn’t be any less than a normal child. For the first six months of my life, the doctors tried to support my spine with a cast. Her mother was not allowed to breastfeed her until she was six months old. Other people were hardly allowed to touch her because of her delicate condition.

 In Kilifi area near the large and famous Coast General hospital, Nafisa Kutubudin Khanbhai was brought up. Her parents worried what school to take their gem to. Special schools were not any special anyway and in the early 80’s there were not many choices in terms of schools with special needs. They wanted her to lead a normal life like any normal child. Coming to their rescue, Mrs Rosy Ganiwalla who was a teacher then was able to enroll Nafisa into Alibhai Panju School. This was when her journey started; not just as a child or as a student but also as a survivor. Life was not going to be any easy for her in normal school. There was stigma. There was speculation. There were a lot of rumours. None of the other children would easily understand why until the age of 9, Nafisa was still wearing nappies. They couldn’t fathom why such ‘a big girl’ would still get dirty by passing out stool or why she always had to carry an extra pair of clothes everywhere she went to. Slowly, other children stayed away and for those who understood her condition, pitied her, something she didn’t really like.

But how many people actually understand what spina bifida is all about? It was either just the doctors or its victims and at most, the people who had relatives or friends affected with it who knew what it were about. Her hip had a crack and thus had to be operated on. This is what had caused all the health complications in Nafisa. She could not walk unless with her crutches. She could not control the urine and stool unless with medication. She became a victim of strange stares, whispers around her and eventually, stigma.

Something else unexpected happened, Nafisa became a woman at the age of 6. “My white uniform turned red while at school. I thought I had hurt myself. My mother was called in and took me home. I stayed out of school for three days. Later my parents were told that although I would menstruate regularly, there were low chances of ever being able to conceive.”

Adolescence at such an age can be very alarming. Still in diapers, Nafisa was already experiencing the monthly periods. She was already exposed to the world of cramps, breast pain, pills and darkness with barely any light at the end of the tunnel.

“My school deskmate used to make fun of me; talk about how I smelt of urine and waste and how disgusting it was. She wasn’t the only one though but I don’t blame them. We were just kids; barely understanding what is really happening to me. It used to make me sad but I never used to cry about it. This is because I happened to have amazing friends too; friends who supported me since. I had my neighbour Fatema; we used to go to school together and spend time together after classes too. She was the same girl who used to buy me snacks during break period,” Nafisa narrates.

As expected, Nafisa never had much interaction with her class mates. Not everyone was ready to look beyond her disability and her helplessness but still, not everyone totally ignored her. Some few friends really tried to cope up with her situation and helped her whenever she could. During the prayer time, the students would all go to the mosque to pray and getting stares from everyone as she removed her shoes was not a surprise. Yet she learnt to ignore all that and be the strong girl she is. As they say, ‘when they stare, make it worth their while.’

Mrs Fatema would go to her school every day during break time to change Nafisa’s nappy, something even the house girls used to refuse to help with. And whilst her friends played around merrily, she could not take part in any out-door activities.

“Since Nafisa’s birth, my life changed forever. I dropped everything and I had no interest whatsoever in the life out there. My life now revolved around Nafisa. I was always thinking, thinking and thinking. What will I do? What should I do for her? It has always been about her. I wanted her to have a comfortable life. We both wanted that; her father and I.”

Locked away from the normal life her peers enjoyed, Nafisa would soon find herself falling in love with books and movies. Nancy Drew books were her favourite. She would imagine herself lost in a different world, tailing Nancy as they uncovered piece by piece of new clues and evidence for a new mind-blowing case and draw in sharp breath as they discovered, together, something unexpected or find themselves in trouble. She would borrow the books from her friends but those she brought herself, she treasured even more.

So it passed that her free time was spent lost in the imaginary worlds offered by the crisp pages of her books or glued to the screen of their TV watching Tom’s and Jerry’s shenanigans play out. These were her happier moments, she recalls. A bubble all for herself. A tiny one but enough for herself.

Nafisa’s impairment meant that she had to frequently visit her physiotherapist doctor Kishore Adatiya who dedicated her efforts to seeing Nafisa overcome her paralysis and walk on her own. But grit and effort alone wouldn’t be enough. Every six months she had to travel to Nairobi to make her calipers (devices that enable people with motor disabilities to walk and thereby remain mobile) which were being made in Kabete hospital.

At the age of 9, Nafisa started getting persistent stomach aches. The younger of her two brothers took her to hospital where she was told that both her kidneys were infected. She was operated on by a visiting doctor from India. At that time, she was the first and youngest child to undergo that procedure which left her wearing a urine bag (in medical terms known as Urostomy i.e. when a bladder is bypassed or removed, an opening in the belly (abdominal wall) is made during surgery to redirect the urine. The patient is thus unable to control urine coming out so a pouch, which is the urine bag, is needed to collect the urine as it comes out).

“It costs me 7 pounds and 50 cents for every urine bag for Nafisa and the bags were being manufactured in Denmark. The financial costing was becoming heavy on me and her father, and that is when my sister Tara, who lives in the United Kingdom, stepped in to support us in buying the bags. She also raised Nafisa until the age of 6. I didn’t get much support from family but I can’t totally disregard the little much they offered,” Nafisa’s mother says.

Despite all odds stacked against her, she persisted in her pursuit of education. She wasn’t exactly the genius of her class but neither did she settle on being the tail. For her, everything was a struggle but she kept up with the top students as much as she could and never strayed from the top twenty. Her teachers, who mistook her struggles for apathy, complained when she lagged behind in her studies. It was the price she had to pay for wanting to be treated normally, like the rest of her classmates, for trying to prove that her physical handicap bore no effect whatsoever on her ability to learn and think like anybody else. One sentiment she does share was her dislike for maths. “Maths was my childhood enemy, maybe my foe for lifetime.” She would tell you if you prompt her. She would always skip maths classes to the extent that her maths exercise books were literally empty. Her class one teacher was another particularly negative highlight from her early school life. She was too harsh, too rigid; the type to give their seven year old students nightmares. It was from this point, perhaps, that she first learned to hate.

After school every day Nafisa used to go for tuition where she made another friend Naheed. “I remember how we would always carry Jujube (commonly known as ‘kunazi’) to the teacher’s home where she conducted the tuitions. When she got distracted with a phone call or when she disappeared in her kitchen, we would quickly throw the Jujubes into our mouths and act innocent when she is back. Despite everything, I did enjoy my childhood,” She laughs lightly.

It was these kinds of moments that gave her the strength to go on with school life but that was only until class eight when she dropped out. Her medical condition was too heavy on her shoulders and decided to call it quits for school life. Yet still no one could ever forget that she had once won the most disciplined girl award or that she had done her very best to not let her disability or stigma fail her entirely. Of course it did mean she had to give up her dream of being a lawyer but she never gave up hope in life. She decided to accept this situation fast and not dwell on the things that couldn’t be changed. She therefore soldiered on…

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“Since her childhood, Nafisa, never accepted to be left out in anything just because of her condition. She would always help me out in the kitchen, peeling the potatoes and cutting the tomatoes. She was still that strong girl seating on a table to make her bed, arranging clothes in all the house ward robes and dusting the place. She enjoyed setting up cutlery for events; deciding what plates to be used when the visitors arrived and what cups would best fit. She would anxiously and skillfully choose the appropriate dress for the event with matching jewelries. And whenever there was henna at home, she would always tattoo herself with it. Despite everything, Nafisa loved and lived. She just never allowed her disability become an inability,” Mrs. Fatema, Nafisa’s mother says.

They say, ‘beautiful souls have it the roughest’ and indeed Nafisa had her fair share of ‘rough’. Getting friends was difficult but getting real ones was even more difficult. Her social life was greatly made up of people using her for their own gains, misusing her kindness and forgetting her when she needed them the most. “But I have had life-time friends too. Mariya FidaHussein, Tasneem (my kitty group friend) and Hasanain have been more than just friends, but sisters from another mother. There was Aziz Mustanir too, a brother who came later into my life. These are the people who have been there for me for the longest time; even before I grew into the firm and strong lady I am today,” Nafisa says.

However much darkness overflowed in her life Nafisa still found reason to find happiness and joy in the blessings in her life. She created her best childhood moments from the trips she went with her family and their family friends to Tsavo, Amboseli Park and several other beautiful places that exposed her to that light at the end of the tunnel. Adnaan Bhaiji was the son of Talib Baiji; Nafisa’s father’s best friend. “Adnaan was so charming and naughty and he always knew how to make me happy. He always came along to the trips in the wild. And when we settled in our hotel rooms, he would come to me and excitedly tie his dirty socks or any clothe around my eyes before disappearing for her to find him. He would hide in unexpected places like on a wall and still expect me to find him. He would untie my neat braids and mess with my hair and there were those endless surprise birthday parties that we would do for each other…We shared such a special sibling bond that would live on for a long time afterwards,” Nafisa narrates nostalgically.

Her other childhood friend, Anar Gulam, made it a trend to visit Nafisa every weekend or on some weekends Nafisa would return the favour, and sometimes, she too joined them during their trips to Tsavo or Amboseli or wherever their next vacation adventure took them.

Life was not all that bad after all. Her parents raised her with a very positive attitude, with tremendous support and showered her with love such that she would never feel alone in her journey. Yet there were a lot of surprises yet to come…


Today we celebrate world spina bifida and hydhydrocephalus day. We celebrate the patients and warriors battling with the two. You are indeed an inspiration to many of us! TO BE CONTINUED. PLEASE STAY TUNED…