Nish's story

I have been a Juvenile Diabetic for 15 years. I am 24 today. Before you think otherwise, I was never overweight. Though shy, quiet and sensitive, I was in fact energetic, healthy and physically strong before the onset of Diabetes. I was also quite thin as a child and hardly ate much, though I did have a fondness for candy, bonbons and chocolate like many kids do. Moreover, not a single progenitor or existing family member of mine had any form of Diabetes ever. One can then safely say that the notion of lifestyle and genetic factors as attributable stimuli in my case, is ruled out. My heightened physical and emotional sensitivity was rather unusual though. I remember that I had some issues at school, following my family's relocation to India from abroad. And this wasn't just culture shock resulting from the unforeseen move to India. After some counseling that I attended, an IQ test was recommended for me.
Fearing that something was wrong with me (or worse, that I was a retard), I reluctantly agreed to undertake a formal test. It turned out that my IQ was 136 and I was advised to enroll in a special education program, which I didn't do not only because of certain situations that required more urgent focus back then but also due to the fact that special schools and programs for the gifted hardly existed in India then. They are still relatively scarce in India today and the school environment that I spent many of my years in, was rather conventional, orthodox and dogmatic - a factor that caused me much stress. I don't mean to digress here but the reason for its mention at this juncture, is not borne out of any megalomania on my part - rather, it is a contention that I must have been very precocious as a child! This precociousness took over when a stressful life event assailed me when I was eight years old. Yes, eight-year-olds can face stressful life events too! These stressors aren't stimuli that necessarily impose themselves on you only when you are over 40! I will not venture into a detailed account of this event here other than that my Mum was consumed by an illness that nearly took her life and we received not an ounce of family support without having to beg for some mercy from our end - a move that won us some grudging tolerance, though not without criticisms leveled at me and my baby sister, and claims from my maternal grandmother that I was the one who had brought this illness on my Mum, with all my troubling and petulance. Besides the ensuing thoughts of suicide that engulfed me many a time, I nearly attempted one while staying in the grandmother's place while my Mum was in hospital fighting for her life. What's more, the grandmother dissuaded Mum's wealthier elder sister from flying down to India (from the Middle East where she was then based) to see my Mum, explaining that it would be too expensive for her to buy an air ticket! It could have been the last time my aunt would have seen her blood-related sister, if she did come down to visit but she heeded my grandmother's advice and didn't. Now you get the picture. I fervently prayed to God requesting him to punish me instead and swearing that I would take whatever blow I could in lieu of Mum, if I could just have her back alive.

My Mum did survive against many odds. However, it cannot be mere non-stress-induced coincidence that I was diagnosed with Juvenile Diabetes a year later, after nearly seeping into a ketoacidotic coma because no one around me fathomed that Diabetes could befall me - the strong Niky (my once-upon-a-time nickname) that they came to see me as. Whether that was a repurcussion of my fervent vows to God during Mum's surgery is for you to decide! Another factor that could have precipitated it was an injection I got from a quack dentist I went to just round the corner of my house for a root-canal treatment for two front teeth I had broken while dancing and falling flat on my face just a couple months ago! It turned out that the dentist didn't use a disposable syringe because I came down with a crushing viral fever just about a week later. After that, things pretty much returned to a semblance of normalcy. I had just begun sixth grade and had been shifted to another section - so I had new classmates and a new environment at school, which I wasn't sure I liked more than the old section of classmates I had grown accustomed to in fifth grade. My new batch of classmates mostly left me to my own devices and I could be found either sketching, colouring or reading books during free periods, recess and between classes. It was what I liked to do and I didn't find gallivanting or playing pen fights and arm wrestling with my benchmates more interesting than the book I read or the caricatures I doodled. Not because I thought I was the best but really because I just found some solace in art, colours and words - and I think I liked that world better. Shortly after my viral susided, I began to get increasingly more thirsty, not with the progress of each day but with the progress of every passing hour! I usually never went much to the school canteen, but autumn 1996 saw me pop down to the school canteen every recess hour, desperate for a bottle of Fanta, Cococola, Pepsi, Sprite or Miranda to quench my thirst, after I had exhausted the water in my own school water bottle. (Our school hours were long!) and this was during the era before the emergence of diet soda and Cococola Zero in India. I was extremely puzzled when I felt much worse - and even thirstier - after every drink of Fanta or Sprite. I also had a desperate urge to pee. What's worse, many schools in the city of Chennai in India during that time (even private schools) had very poorly maintained and unclean loos. To call them poorly maintained and unclean would in fact be an understatement. Also, they were Indian-style loos (something I didn't mind once in a while) but something I was not very comfortable with for regular use (especially during such a time when I felt like peeing every five minutes) as I couldn't squat down for a long time because of a surgery I had had on my knees when I was five. Earlier, I wouldn't ever pee in the school's restrooms but that autumn saw me dashing to a reeking stall every couple minutes after roaming around on campus to find that stray Western-style commode I could catch on to, somewhere on the school's premises. The third thing is that I began losing energy and feeling very tired all the time. As I earlier mentioned, I wasn't fat - back then, I weighed an equivalent of 86 pounds at a height of 4'8". However, I had been born with a high birthweight (an equivalent of nearly 10 pounds) and I did think I was fat because the environment in India is generally veered towards making large-boned kids feel fat, clumsy and ungainly - probably because a vast majority of Indian children are small or medium-sized. During the time I had these symptoms, I couldn't even bend down, crouch or do many of the normal things that many others could, without feeling very sick. Sadly, I associated my lack of energy and fitness with my burgeoning weight and what I thought was corpulence. Mum was still recovering - and the entire household was preoccupied with other things - so all along, I kept the experience of these symptoms and all my other thoughts and feelings to myself, either fearing rejection and ridicule from my own family or not having the energy to care to explain. In a few weeks or months (I can't remember very clearly), I began to develop blurred and double vision even in broad daylight - this was something I noticed instantly because I am an avid reader. I couldn't even read, paint or do things that required the use of my eyes, anytime after sunset. I sat in my shell, miserably thinking that I was being punished by the Almighty, that I was going blind because I was reading, painting and writing too much, rather than spending more time outdoors with other kids my age. I just couldn't eat a full apple without gagging up. I felt hungrier and wanted sweets but felt worse everytime I had one - there was a sliver of sweet sourness (something like minty morning breath) wedged somewhere in the back of my throat right through the day especially after I ate a sweet or anything at all for that matter - and I thought that I was just overeating, getting obese and/or that something else was happening to me. At nights, I would wake up 5-6 times to pee and drink water. Many a time, the sourness at the back of my throat would be so nauseating that I would gargle after drinking gallons of water, rinse and occasionally brush my teeth in the middle of the night before diving back under the covers for some fitful sleep that would be once again interrupted by the compulsion of this ritual whenever my body demanded it on a whim. At this point, I knew that something was definitely wrong with me. In a few weeks, there wasn't much I could do besides just going to school, returning home and collapsing like a house of cards. I once did reluctantly tell my Mum something about the weird symptoms I was having. I think someone brushed it aside as an effect associated with a sweet tooth and said it was because I was eating more cream crackers in the afternoons, than I should! Our family doctor told my parents it was common to feel extremely thirsty during the Monsoon weather that Chennai was known to have with the onset of Autumn. I stayed aloof from everyone at home and outside. At school, I remember that there was an annual project day coming up - this meant that all kids from every class would be divided up into different groups to build models or make illustrations on some educational topic, which differed from class to class and section to section. The handiworks of every group would be displayed in a kind of exhibition during the final day and kids would need to explain the workings of their model, flowcharts, illustrations and such. I don't recall belonging to any group at school. Technically, everyone was supposed to be a part of some group but I was so reclusive at the time that I guess neither the teachers nor my peers bothered with me. So regular class hours were replaced by long stretches of time where I would just sketch, read a book and sometimes talk to another lone soul occasionally engufled in a similar situation. I began to miss classes then - and at one point, I told my Dad that I would enjoy school more if only we were taught to collaborate, understand one another and exercise our curiousity and understanding as learning muscles rather than being trained to regurgitate and forced to learn things in a stultefying way through a self-righteous approach that could provide only limited guarantees of opening up to newer creative and intellectual possibilities, going forward. I even requested him for a change of school. My Dad was very empathetic and understanding. But there was nothing much we could do about it that juncture. Somewhere in the middle of all this, I lost my appetite to eat anything at all - and soon lost a lot of weight, dropping down to an equivalent of 70 pounds or less. I'm not sure to what extent all these symptoms got noticed by others, notably my family. I just remember feeling shitty, depressed and unable to really do much. A week later, I went out somewhere and returned in the early evening only to find myself unable to move anywhere and so dehydrated that I couldn't even eat or drink anything. I was just throwing up anything that went down my throat. I crept into bed, slept for a few hours and awoke feeling even shittier. I thought I was dying. At that point, my panic-stricken Mum told my Dad I didn't look very good at all and that I should be rushed to the hospital. Maybe I went back to sleep after that or grew unconscious, I don't remember which, but I do remember waking up in the hospital and hearing my pediatrician tell my Mum that all my reports were normal. I felt shrivelled up and rotten and I was just wondering what the hell was wrong with me if all my reports were really normal. Finally, the doc suggested a blood sugar test to my Mum. I could faintly hear my Mum reel in shock and swear that it couldn't be Diabetes that was the issue with me. Somewhere in the submerging recesses of my subconscious, I echoed her thoughts inwardly as I lay there on the hospital bed like a silent rag-doll. I was not familiar with what Diabetes really was but I did vaguely recall hearing it somewhere (presumably in a fifth-grade biology class) and mused that it was just something to do with a balanced diet or salt intake or something similar. The doc told my Mum that my symptoms seemed to contradict her contention. A blood sugar test was conducted and the doctor sadly shook his head at my Mum and whispered, "That's just what it is." My BG was 560. I was admitted to the ICU soon after that and was there for 2-3 weeks before spending another 2 weeks in a recovery room. I remember days of feeling sleepy, dehydrated and leaden in the ICU. I was constantly being woken up from my slumber to be pricked or injected with something or the other. My salts and everything had gone for a toss - and they were trying to balance my sodium and potassium levels and get me to a state of homeostasis. I was fed intraveneously for the whole time I was there and that did nothing to assuage the appetite I had regained. For some inexplicable reason, I yearned for a home-cooked meal of idli and sambar - foods that had not held my appeal earlier as much as it did then. I felt far better in a few weeks - and more than being devastated, I was actually relieved to know that I had a diagnosis and that I COULD indeed feel better again! However, I remember being startled when I was told that I would have to continue taking Insulin injections and pricking my fingers to test my blood sugars all my life. I had been shit-scared of injections right through and here I was practicing how to hold a syringe without feeling faint and injecting water from an Insulin syringe into an orange! I was later relieved to gain some weight and finally taste some food again and not have to feel like retching when I ate an apple. A few months after my recovery, I weighed an equivalent of 79 pounds at a height of 5 or 5'1". Also, once I had my diagnosis, my immediate family and doctors were rather supportive. I should credit my attitude toward Diabetes today to the positive approach adopted by my Mum, the team I met during my diagnosis, a doctor I began to see after that and a medical entrepreneur who had been my personal doctor for a long time before my relocation to the States. Given the near-catastrophic state I had been in during the time of my diagnosis, I had had so many excruciatingly painful injections and blood tests in the ICU, that an Insulin injection and a fingerstick blood test seemed minor in comparison. I was told that Diabetes could never be cured but could be controlled and that I could have and live a normal life if I managed it well. I was encouraged to pursue my art and writing - and I even developed a penchant for embroidery and stitched some doll's clothes while I was recovering at home.

The school environment wasn't as supportive though. I missed a whole term in school and had to spend considerable time (in addition to all my ongoing classes and stuff) sitting on the floor by a dingy passageway outside the teachers' staffroom during recess and/or after classes and writing scores and scores of tests that I had missed last term (though I was exempt from exams that term) to be able to go to the next grade. I have however been fortunate to land an early break in my career. I forayed into writing professionally and that introduced me to journalism and a diverse range of experiences, ethnographies, colours, scents, peoples, cultures, idiosynchrasies and mores associated with it. My works began to be published in national broadsheets and magazines from the time I was 13 and I was soon appointed to freelance regularly for The Hindu, a leading English daily in India. Recognized for my work in art and writing, I soon became a teen celebrity in India when I published my first non-fiction book at the age of 17. I left India at 19 after I got accepted into a Masters program in Communications Research at the London School of Economics, UK. I have mostly been abroad since. Currently based in California, I continue to pursue my career as a journalist-writer, social communicator and author today. I may soon enroll in a research program at Cambridge University, UK, Columbia University or somewhere else in the US, where I hope to study journalism or research on the role of participatory and social media in enhancing creative, collaborative and cultural learning among gifted and alienated children and youth. Writing has always been my passion since I believe I can reach out to people and help them make sense of who they are and of the meaning of their lives. Amidst my social campaigning endeavors, I have addressed gatherings of Type-1 Diabetics as a part of a series of inspirational awareness sessions and group therapies for other recently diagnosed Diabetic children and youth in India. Over 90% of Diabetics I have met in these camps are more often than not from poorer families that cannot even afford proper treatment. I myself hailed from a very modest family. Having seen such scenarios, my blood boils when I read or hear that Diabetes is sometimes categorized as a rich man's disease. It doesn't augur well to generalize shameful archetypes.
Another thing I would like to talk about is the idiocy of some people who think that wolfing down a small meal every 2-3 hours (something that is recommended for everyone but absolutely necessary for Diabetics) makes us fat, lazy or both. Though I didn't (thankfully!) suffer from any of the depression that most recently diagnosed Diabetics undergo, I did get teased a lot in school not only for being intellectually different but also for eating every couple hours! In fact eating more this way helps you get thinner by helping you burn more fat. If it wasn't so, the svelte models and actors that many of us lionize today, wouldn't be doing it too! I was amused at how ironic life could be, when I later received a few modeling offers for bridal and cold cream ads across London, Mumbai and such, myself (Today, I weigh about 138 pounds at a height of 5'8" but I certainly do not have the stereotypical model's figure - I do think that it's how a person holds herself that makes her better placed to endorse a brand - more on that later though). Conversely, many of you (especially Indians) might see what I mean when you think about that relative who not only never got on with people but who also got fat because he/she ate nothing all day but junk and/or just two heavy meals sun-up and sun-down to such an extent that he/she could not distinguish between their torsos and tummies. Don't be fooled if people like that can still reach forward and touch their toes without bending their knee joints. If you are well-acquainted with the dynamics of human symmetry, you would understand that it's probably because their legs are shorter and their torsos longer and bigger! Doesn't that make sense? The point here is that ignorant people may ridicule or make fun of us for not being able to touch our toes while stretching after exercise or for consistently munching on some chow every few hours but don't let that dishearten you because that's just what they are - ignorant and as pea-sized as their brains are!

The years ensuing my diagnosis haven't been easy. But they've definitely made my life richer with experience, diversity and perspective. Today, I am on an Insulin pump. Since I went on it, I have acquired a newfound awareness and understanding of the ailment - in some ways, it's been like I've been diagnosed a Diabetic again. I am writing my next book. I have a personal trainer, I am an avid swimmer. I've begun hiking and skiing and I have a boyfriend who later became a supportive and understanding husband too. So don't forget that there is definitely a refulgent beacon of light at the end of that tunnel.

With 246 million diabetics across the world today, we need to refrain from classifying Juvenile Diabetes as a lifestyle disorder and stray away from the stale mould of talking solely about how Diabetes can be managed. We need to instead do something to discover a cure for Diabetics (especially Type 1s) who inescapably and inevitably have to live on needles for the rest of their lives, regardless of what (whether diet, genetics, infection or stress) brought their ailment on. That cure may eventually happen after our lifetimes. But all I can say is: wear a positive heart on your sleeve and cherish your gifts. We may be Diabetic and/or have other issues, but God has given each of us something else (that others perhaps don't have) to compensate for it. Find the strength in you to nurture those gifts and make the world your oyster!

Nish