My life since Wilson Disease

Many of us constantly crib about their lives when things go sour, awry and feel life dealt unto them is plain unjust. But if they were to see the world around them - 'BE ALERT' to their precincts, their city/village ....they will realize that they are actually luckier than a certain few.

There are people I have known whose lives are a misery. There are these two friends of mine, in their early twenties,  who 'Live each day with as much as cheer as they can even after knowing well that their days are numbered.' And their enthusiasm is infectious. Yesterday evening, I was quite upset over a few things, but there was something posted on FB by a friend which found me wear a smile. In their own unique way, these friends, dealing with plightful health issues day-in & day-out make us feel special. 

What follows is a GUEST POST by a 22-years-young female friend who despite being afflicted  with the genetic Wilson Disease, makes the best of what life offers her radiating happiness all around. The post is re-produced through an email sent by her to me with her consent. Read on: 

April 29 2008 My life turned upside down,

That was the day ,

I was diagnized with wilsons disease 

Via a brain MRI ,

I was 69 kgs , very healthy and 5 11' IN height 

Admitted in holy  family hosp,

Doctors put me on penicillamine,

Slowly my voice was fading,

My balance was terrible,

The way I walked,

My body slowed down a lot,

I went into severe depression,

was addmitted in Masina rehab,

There they shaved my head,

All the doctors would hold me,

And the female doctor would inject me,

And later take me for  ECTS, electro convulsive therapy,

I took 14 ects,

Went into comma in the process,

But managed to get out,

MY MOM WASN'T SATISFIED WITH THE MEDICINE,

CAUSE SHE COULD SEE ME GETTING WORSE,

medicines are supposed to make you better,

In my case it was opposite,

so mom finally consulted a doctor in holy  spirit,

Dr Vyas , an elderly doctor,

He told my mother give her  zinc,

And next day mom couldn't get zinc tablets, so she bought the powder form,

And consulted with the doctor,

The doctor approved,

Next thing after dinner my mom gave me the powder,

told me to have it,

I took it,

Immediately I kept on vomitting and shitting,

All my body fluid was drained,

My blood to was out,

I was rushed with an ambulance,

Straight into the ICU , My heart stopped beating,

The doctors had to resussicate me, 

I came back,

My mother lost all hope, 

That I would live,

But when I got discharged,

I was 30 kgs,

Just bones,

Over the days, 

MOM STARTED TO NOTICE THAT MY JAW WAS GETTING LOCKED,

And i wasn't eating well,

I had the rials tube in and out 7 times,

But that too did no good,

Finally I was operated in bhatia,

Surgically they inserted a tube,

which connected to my intestines,

From out,

And my mom would  gimme my food liquidifyied,

in the food bag,

It was there for 7 months 

I am a fighter by nature,

I told myself,

I have to fight this,

I am alive,

So what if I am not normal,

At least I get to live a  life,

You never know how strong you actually are until being strong is the only option you got. 

till date i am dealing with many issues,

But I am living,

Thats the bottom line 

I came to know, learn and understand what the genetic Wilson Disease is all about from this girl coping with failing health with grit and gumption only today. 


For the readers, I looked up the trusted Wikipidea on Google and this what they say: 

Wilson's disease or hepatolenticular degeneration is an autosomal recessive genetic disorder in which copper accumulates in tissues; this manifests as neurological or psychiatricsymptoms and liver disease. It is treated with medication that reduces copper absorption or removes the excess copper from the body, but occasionally a liver transplant is required.

The condition is due to mutations in the Wilson disease protein (ATP7B) gene. A single abnormal copy of the gene is present in 1 in 100 people, who do not develop any symptoms (they are carriers). If a child inherits the gene from both parents, the child may develop Wilson's disease. Symptoms usually appear between the ages of 6 and 20 years, but cases in much older people have been described. Wilson's disease occurs in 1 to 4 per 100,000 people.Wilson's disease is named after Samuel Alexander Kinnier Wilson (1878–1937), the British neurologist who first described the condition in 1912

I  would like the readers among you to open up and share their health  problems that they may be facing. This could well go a long way in being an instrument to change in inspiring others who are otherwise healthy but go astray with the vices that the society they live in provides them. 

Of Weird FB Friend Requests

Yes, I may be a networking addict and whoever I tend to meet in the offline world on professional grounds or otherwise it would be no surprise he or she may be on my friend list. And the ‘World of Basil Da Bullet’ well knows that!! There are still many others who I may have not met yet or may never meet. But there is every chance that I have connected to that individual online – on FB. 

My interests being varied – I have connected with people from the field of media, authors and authors-to-be, bibliophiles, cricketers and cricket fans, esp. SRT fans (Sachinists), glamour – models, hot-shot fashion photographers, fashion designers, hair-stylists, actors and actresses, singers …so on and forth, the list being endless.

Oh yea, of course, thanks to the social networking tool, I have been able to keep in touch with relatives and maintain contact with classmates from school to college years, colleagues – former and current.

What prompted to writing this post was a shocker friend request I had received earlier this afternoon around 12.45 hrs. And it found me an urge to immediately write a post on the same.

The friend request which I have not yet accepted and not likely to came from a profile bearing the name of Raggu Pickerson from Chennai, Tamil Nadu. His profile states that he has studied at Akita Municipal Junior College of Arts & Crafts. And the intriguing part of his profile says that he works at the municipality (cleaning service) and displays his pic (or is it) as a bearded fellow, not all that unkempt by appearance and quite well-dressed but carrying a partially-filled sack with garbage seen strewn in the background.

I have taken a screen shot of this strange individual’s FB Homepage with the pending friend request and I am sharing it here. Do give your thoughts on it.



The online world can really be vague isn’t it? I am sure you have your own little stories to share on the same. And I would love to hear from you with regards to it.

Mujhse Fraaandship Karoge

Today is the first anniversary of my friendship with one of the craziest girls, I have come to having known, but I am fond of nonetheless. She is a real hun-bun. Edible? That, I would digress from making known :D

A cute girl, right from the outset we have had our fair share of fights. Loves irritating me, not that I am any less :P

Rewinding back to the day I came to know about her – exactly a year back on this day, I was quite upset returning home. Yet another opportunity of watching an International Cricket Match LIVE at the Nehru Stadium, Fatorda, Margao between the home team against the Australians went abegging as playing conditions were deemed unfit.

Back home and switching on t my computer and logging in to FB as is my wont; I had this friend request pending. A cutesy, happy face stared back at me, not that I was taken aback by that but the close to a dozen - and - half mutual friends we shared. And that too my former colleagues at the organization I am with for just over five fruitful years now. I had an inkling at this point where this would lead to.

In my inimitable style, with no courtesy intro message coming in, I did not click the accept friend option. But keyed in a quickie. I asked the gal for an intro and prompt came her reply. And within a few minutes, she became my friend on the social networking tool.  Yes, I am not like the often-found guys on FB (and or Orkut and the like social networking sites for that matter) looking for cute or sexy chicks online to befriend and randomly send requests. Yes, I do send out requests to beautiful girls if I find something interesting about her, but it is always with an intro. Any girl I have befriended online and who I have eventually met or even spoken to for that matter, can vouch for that. I haven’t changed as much. And I stay true to my self.

And that is what this girl came to understand - I can be nice, a real sweetheart but I can also be rude – a meanie. I can be funny, crazy and also can be sarcastic and have my PJs. 

We got to meet sometime before year-end (end December – I think the day was 29^th). I had gone shopping with mom and on my way back home went to meet this FB character of a pal at her work-place behind Grace Church, Margao. Pleasantries exchanged, we did not get to speak much. Alas, she was shit scared of her boss.

In time, I considered her to be one of my good friends or perhaps on her way being categorized thus. I even celebrated her birthday out at Dom Pedro’s, Margao, albeit belated by a few days. That she invited me to attend her grand 21^st birthday three days earlier, took me by surprise. Not that she, hardly had known me in person yet, but that she did not invite her odd friend who she had personally known last few years. It is another matter I had not attended her birthday. But I make her feel special on 9^th Feb, or I suppose I did, with a treat and a nice Aquarian gift for the Piscean later that evening.

B'dai Treat at Dom Pedro's 

At the Aquarium where Val got her Eenie & Mienie - lil Goldfish :)

A day short from the anniversary date of our friendship, she came over to my place to present me with a cute kitty who I have named Valie. A delayed cutesy gift, but nevertheless, so sweet, adorable and meowyyy

J J

Cute Cats at my place yesterday 

She has once said, she can be herself around with me, the feeling is thus mutual. Not known too many girls who are as broad-minded as her with whom I can talk A-Zee. 

Love that pissat a lot ;) Val is what I call that Gal :)

Tryst with a book idea

Writing a book had been a thought tried to put into my head when in my higher-secondary by an aunt who lived overseas. But I never believed I had any potential. She was quite encouraging realizing that I used to write 'Letters to the Ed' on the papers and I was on my way to be a journo some day. She even asked me why not compile my published stuff into a book, but I was like naaaa.
Then a few years later, I explored the idea of coming up with a complilation called 'Life Until 25' but I found no takers. Come to the current year, sometime June when I was not having the best of my days health-wise and having recently read a novel 'The Last Scraps Of Love' by Nipun Ranjan which was riddled with grammatical errors right through, I said to myself if this guy could get published, why not I?
It was then I said to myself, may be not a novel, but I could always write an anthology of fictitious short stories themed on love. And I targeted myself with a story to write a month.  And so began in right earnest my effort, and within the first two months I wrote 'A Hope of Love Stays Afloat' and 'Virginity Deflowered' and had a few other story ideas in mind but which did not materialize. Reasons being inexcusable, to be frank. Some weeks ago when I realized my cousin was on her way to be a published author, my happiness from within knew no bounds. Finally, we were to have the first writer in the family. I helped her with my social networking skills, and within a matter of a few days her book manuscript got approved. While she was all  thrilled about the approval, she had been asking me 'Why not I get my short stories published too' (I had told her earlier I was writing short stories)  or alternatively, get my articles published. Hmmmm, while I haven't dwelt on the latter idea, about the collection of short stories, I need time, effort and dedication to get re-started. But when ?! It is another matter altogether but shelved for now.
Reason being over an SMS late 12th October night, I got an offer to write a biography of a girl at  the end of her teens. She kind of told me her poignant story at the point and even mentioned to me that she was penning her story, at 13, when her uncle just tore off the pages and she hadn't the heart to start all over again. This was when I popped up the question 'I could write your story' and she was 'all game.'
To rewind a bit, it was Divine Providence (which she staunchly believes in) that she connected with me on FB and somehow got my cell number and since mid-October we have been texting a lot and she had quite a lot to tell and I was all the more curious to know more and more about her. And I was like 'This is it' - 'I always wanted to write a biography' and I had a willing young woman to reveal her story 'Dil Se'.
Cut to mid-morning - 20th October, I had plans to meet an FB Pal, Sana Krishna - mutual friends with Manasvi Mamgai  Femina Miss India World 2010 which for some reason did not materialize. And I was still stuck in town (Margao, where I live)  beyond 10am. And needed a contingency plan to not let my day away from work go to waste and awry.
Then it immediately sprung to my mind, about the girl who had given her consent to write her biography. Till the day, we did not get the opportunity to meet up for some reason or the other. So  I decided to call up the girl and fix a meet that morning  itself with her and get started on the book. And fortunately, she was up for it on the day as she was still bumming on her bed with little else to do.
While she may have been on her way with her beau (who dropped her off) couple odd hours later, I told her that she would be relating to me about her childhood which would be the 'First Chapter' of  the book-to-be. And hence later mid-noon, we met up at a place in my locality away from any interference or inquisitiveness of any individuals. And she got talking and talking. She expressed her thoughts, emotions and experiences of all she could remember and was told about in relation to her life in an easy and understandable, clear, no - holds - barred manner. At times, I found her story so emotional, that I could not look into her eyes and continued to pore down over my book scribbling away my notes as she divulged her story. At another time, I sensed her voice go a touch quavery, looked up, saw that she was alright and did not require a tissue or two (had that in my bag, just in case).Her open-mindedness, bravura to speak from her heart continued to amaze me.
In the two hours odd spent with her, hearing her out attentively, asking questions and scribbling away her emotional story with a few interesting anecdotes thrown in for good measure, I found her strong-willed, determined, with oodles and oodles of guts and gumption. It is no mean task to pour out your heart, your soul to someone you befriended like about two months ago online and meeting himfor the first time to get the book idea in motion.
Day 1 - October 20, 2011 - 2 hours (approx) on the tentative Chapter 1 was very encouraging. The respondent bared her heart as should be while working on a biography and the content was more than what I had expected. In fact, I expect more to come while I begin work on the skeletal details disclosed to me on the  'First Chapter'.