Tuesday, December 14, 2010

Yes, you can

I am a nobody who wants to be a somebody so I can make a difference in everybody... but nobody wants to give me a chance to be a somebody so I can make a difference in everybody....

It all began at least I think so in May of 2004 when at the age of 36 I was diagnosed with Parkinson's...Faced with a diagnosis of a chronic condition, which while thankfully was not fatal was still uncertain and terrifying. As I sat in the chair listening to the diagnosis feeling like I was adrift, denial springing to the surface …. not me I still want to do so many more things, my babies only 2 yrs and 5 years then... what am I to do?

The fear, the helplessness, the guilt, the utter terror simmering away inside as I continued to try and live my life as normally as I can...thinking if I ignore it it will go away, denial at its peak, trying to deal with the mental and emotional and physical changes the disease was doing to my body and trying to deal with the multitude of side effects the medications were having on me, while still trying to do everything I was doing before trying to be everything and pretending that everything was fine and I could handle it.....

I stoically continued, falsely trying to placate myself that everything is fine, and in the meantime faced with an uncertain future there arose in me this selfish desire to fulfill my dreams …. half formed, things I wanted to do when the kids were a little older, suddenly realizing that time is limited and that I had to do something sooner rather than later.... this fear of becoming a vegetable, confined to a wheelchair, not being able to move or talk looming in my mind as I tried desperately to choose what to do, be a wife, a mom, or a selfish person and try and do something worthwhile with my life while I can...

No one understood the frantic desperation, the searing guilt, the utter desolation as I battled my inner demons....the almost impossible task of being there for my family, trying to do something with my life and dealing with something as complicated as Parkinson's..

Now as I write this in 2010 6 years later it has been a hell of a ride, an emotional roller coaster, an emotional hell hole a period of justifying why I want to do what I want to do, of being branded as an extremely selfish person I continue my lonely crusade as I cannot explain to anyone this burning innate desire I have to connect with people to tell everyone that there is lot of good one can do, of positive attitude and not let negative emotions get us down...

All this time not realizing that I myself was dealing with a lot of negative energy around me, being told what can a person who is past her prime, and shaking with tremors can do to change the world.... who am I but a nobody, why will people listen to me, what the heck do I have to say that is so important?

I do not know the answers to those questions, I just know I have this strong desire and the utter conviction to connect to do what I can in whatever way I can to connect....

That is when I discovered the power of the internet. As I sat in my chair pounding away at the keys, pouring my heart out, my anguish my hope my dreams in the written words, as I created a blog where I put my heart out there and uploaded it leaving it open and vulnerable, as I researched and found people connected to them but no one understood my desperation, the feeling of my life's energy seeping away like sand through my fist, slowly but surely.

This is where I think my famous Taurean stubbornness helped me and maybe my naivety too as I did not give up, as I battled the ups and downs of Parkinson's as I fought the skepticism of my useless wasting of time writing blogs … who the heck is going to read them anyway?....but I doggedly continued some inner force in me giving me the strength and courage to get up each morning, stumble to my computer as I continued to reach out, frustrated as they did not see my point, but the thought of giving up never arose in my mind....

Then I started my own video blog on YouTube. The beauty of technology that gave me the power to sit in front of my computer record what I want to say on my web cam and upload it to the world... and I did every single of my 50 videos up there as of now a labor of love, determination, will power, done without spending any money, just a lot of shakes, tremors, determination.

I am a geek, love technology, gadgets, spent my hours finding and learning, creating, writing, researching and uploading it all to the big world wide web...... my heart, my soul, and slowly I started noticing an interesting thing....

I realized that people actually were reading my blogs, that there were people who were watching my videos that I uploaded, and when they started commenting to how something I had written made sense I remember sitting in my chair with tears streaming down my eyes, disbelief as I read the words that someone out there understood what I wanted to say, someone out there who appreciated my effort it was an indescribable feeling. I then realized that in my own small little way I was making a difference, as I grew and learn something with every blog I wrote as I shared my lessons learn with my videos that I did all by myself, as I learned the technology realizing there is so much one can do by themselves, I realized that if I had not taken the first step, if I did not believe in what I want to do it would have been a shame...

Now two years after I started, without spending anything on marketing, just by using the free resources available to me I can say with pride that my videos have been watched all over the world with a very rough estimate 40,000 times, my blogs have been read by more than 35,000 people worldwide ….

I may still be a nobody and may not be able to reach everybody but hopefully will help somebody, even if that somebody is just me:)



Friday, November 19, 2010

Change of Seasons

Change of seasons....

by Sutapa Kasibh on Wednesday, November 17, 2010 at 7:59pm

Mother nature is truly amazing and I am always awed by the sheer beauty and the routine and ritual that each season has... they are timeless, eternal, beautiful and so awe inspiring....

The year starts off stark, pristine white and bare waiting and preparing itself....As the bare trees tower over the barren landscape it's limbs naked of its foliage lonely and bereft, as the clouds darken, the chill deepens, the heavens open up and lets beautiful soft fat snowflakes like little cotton candy drift down from the skies a beautiful curtain of white fluffy snow as it drifts onto the trees, covering it with a blanket of white, drifting and creating a soft fluffy carpet where you can sink yourself in the cool soft white snow.... at times we have ice pelting down from the skies as it cloaks the trees and the landscape in hard glistening sheet of ice, beautifully dangerous, slick and yet when the sun shines after an ice storm, the ice glitters like crystals and again you are slack jawed at the beauty of mother nature....

Then comes Spring, where little peeks of green sprout through the frozen tundra, where the once barren trees are finally turning color showing signs of life, covered with tiny baby green leaves, bursts of color as flowers pop up dotting the landscape with various hues of colors, tiny flowers to waxy and beautiful vibrant flowers, sprouting all over, signs of life after a bleak barren winter, another on mother natures cycle of life.....

Then comes summer, a time of maturing of flowers, fruits, hot sweltering sun, lush green, wholesome fruits, trees laden with their finery, flush in their prime of life, bestowing shade and food , beautiful flowers, and hot bright sun...

Then comes the most spectacular season of all - Fall - where the leaves get ready to hibernate for the winter, blazing in their glory of red, yellows, oranges, pinks, mauve a virtual smorgasbord of vibrant and dazzling foliage as it changes colors on the tree and as it falls down creating a carpet so colorful, that no human can really capture the depth and intensity of the beauty....

I thank my lucky stars that I am able to be apart of this and experience the myriad beauty of mother nature. Truly blessed...Thank you:)

Monday, November 15, 2010

I am

As I think and ruminate about the person I am today, the foundation was laid when I was born. The lessons my brother and me learnt from our parents holding us in good stead today. The humility, respect for others, dignity of labor, empathy and compassion, belief in the supreme power, more spiritual rather than religious.

Lessons drilled into our heads through words and action, not only told but also demonstrated, absolute respect for elders, care and love to their parents, respect for another person, as we were told there is no one superior or inferior, it is through chance, opportunities etc that one person is better than the other financially or other wise.

We saw our parents take care of their parents, treat them with respect and humility. We saw our dad treat his subordinates and people working under him with equality and love. They were always invited inside our home and hearts, always made to feel welcome, loved and respected. Never looked down upon. We saw our mom treat the maid servant as her own daughter, treating her with love and respect.

What we saw was that the goodwill they shared came back to them several times over. Well loved and respected, the love was bestowed on us.

We were always encouraged to do our best, and thank you so much Ma Ba for always letting us do what we wanted as long as it was within the right boundaries… For letting us have a wonderful and well rounded childhood, for letting us explore, supporting our decisions and most of all for being a friend and a parent at the same time.

Today as we are in the stage of our lives where we are parents, I sincerely hope and pray that we give the right foundation to our kids, that we teach them the love, compassion and humility that you taught us.

I hope that I have become a good person, a person that helps, commiserates and genuinely wants to help others not because she has to but because she wants to. I want this world a happy place, brimming with laughter, health and happiness. I want to let people know how easy it is to be kind, thoughtful and generous….yes I am selfish, am stubborn, shallow sometimes….no means am I perfect…but I believe from the bottom of my heart that it is ok to have flaws, we are humans after all, let us acknowledge and embrace our nuances and work on diminishing our negatives and enhancing our positives…

Will you?

Friday, September 17, 2010

My day in the ER

Woke up to a lower back ache, which went all the way to the top up my neck and around my left side of the chest and it felt as if someone was clutching it tight. Uncomfortable, nausea, restlessness made me decide it would be better to have a doc look at it and tell me that probably it is just gas!

So my hubby drove me and we went to our PCP who quickly did an EKG. While the findings were not alarming, he insisted it would be in our best interests to go to ER and have it checked out....so off we went to the ER. Went in to the ER and the moment we said "Chest pain" we were processed immediately and had an EKG again. Then was assigned an ER room where I was connected to a machine monitoring my heart. Blood pressure taken on both arms and blood drawn and needle inserted for IV. I was termed as a "hard prick" :) which basically meant that it is difficult to find a good vein... this after already trying to find a vein in one hand where they put the needle in the vein and move it around looking for my blood...ouchie.

Then began a parade of people in the room. Male nurses, emergency doc, hospital administrator,
patient advocate....

I was not allowed to take any of my medications as it is the hospital policy. I was due to take my PD meds but could not as I had to wait for test results, was starving as I did not have my breakfast or lunch and it was almost 4 pm.... Asked if I could get fried chicken and fries:) and was told politely - ahem no but we will order u food... uh where is the menu I was tempted to ask but refrained....

Meanwhile I got a slew f other meds, aspirin, nitro under the tongue, a shot of blood thinner in my tummy which hurt, ouch - where is the extra roll of fat on my tummy when I need it:( Constant question - on a scale of 1 to 10 how would you rate the pain....
So here I am closing my eyes envisioning a huge scale and trying to weigh my pain - duh seriously can you put a number to the pain - well it started from a 6 and went down to a 3 --- and I thought that was a good thing, right? was taken to the xray room and they took pics:) I love to have my pics taken but this was not what I had in mind:(

But the doctor came back gave me a serious look and said we would like to keep you overnight for observation and see a cardio --- i was like, huh? but the pain did come down.... apparently that was a concern as the pain came down after the nitro so.... more testing required...

I was fully convinced that this was a minor hiccup and I would go home but after hearing that I had to stay overnight I told the doc ... as cute as he was, I would still like to go home to my family... He said, "I cannot stop you, but if I were you I would stay back"...Damn.... I want my food I said as I did not know what else to say.

The nurse came in and asked if Iwas cold - as I was shaking, this is when I realised I already missed two doses of my PD meds.... so made sure I got one dose in to stop the shaking.

After that the shakes stopped a bit. Watched TV for sometime. After repeated requests food arrived - pasta with baked chicken, brocolli, bread, salad w/italian dressing and chilled pears. Hmm not bad I thought as I feasted myself....

They kept talking about making arrangements for me to go "upstairs" which if one was in a morbid state of mind would mean anything, huh:) They meant the top floor of the hospital, phew:) So I asked when is my private suite getting ready? I am ready to be pampered....

Again that was not meant to happen, apparently lots of people were sick, so unless I was as they said "cuckoo" i had no hopes of a private room.... I said I can do "cuckoo" .... oh well...

Then a nurse comes in saying she is from "upstairs' and had some questions to ask..... So i said ask away....she asked "Did you ever have problems with your heart? " Hmmm I said do you mean the physical or emotional heart??? Huh? she said --- oh well I assured her that all was ok,
then she made me sign a document saying that if I die it is not their fault????

Then finally made it to my room and my roommate was a 96 year old lady:))

Then once I was settled down in my room again began a parade of nurses, technicians, all with a job to do, working off my file.

Poked, prodded, tested....exhausting but in the end came back home with good news and that is what matters.

Also got a call from the hospital administrators asking if my experience with them was pleasant?

I said - considering the circumstances - it was as good, but one I would not care to repeat:)

Wednesday, September 8, 2010


Friends - a meeting of minds, heart and soul, a connect, a rapport, an understanding, an instant connection, shared giggles, fall back when you need a shoulder to lay your weary head, someone who takes you for who you are and loves u unconditionally all of your goofy crazy self.

You meet so many people over the span of your lifetime... not everyone becomes your buddy, there are only a few with whom the connections is total and complete, there are some that are connected but not fully and then there are aquaintances.

You can be friends even if you have not met the person physically, or even spoken to! In the age of social networking we have a whole new way of making friends.....

Again some manage to get close to your heart and become your best buddies where they understand you and your moods and are there for you. Friends who motivate you, love you, inspire you only through their written words and love in their heart and true genuine friendship in their hearts.

A friend is someone who smiles when you do, commiserates when you are sad, tells you the truth even if u do not want to hear it, holds out a hand when you fall, through the good times and bad times will be there, will be ur rock.

This particular note is for all my friends who have enriched my lives with your love, support and motivation. I hope I am also that friend for you.

Wednesday, August 25, 2010


You know when you get one of those Duh moments, where the light goes on and you think why did I not think of it before? Well I had one of those moments.

Well it is as simple and as complicated as hmmm common sense? Common sense is not as common as we think. And no that is not it.

You know we live our entire life trying to fit into this particular stereotype that either society imposes on us or self imposed and if we do not fit that role - oh oh you are in trouble.

The perfect child, the perfect spouse, the perfect parent, the perfect employee/employer, etc etc

For most of us it is like hammering a square peg into a round hole. Ouch! No wonder we are bruised...

We try very hard to find a square peg - and some of us find it but most of us don't.

Rev 1 - We are all similar yet unique in our outlook, talents, perspective etc. We all have some talent in us, some skill that in inherent and needed to complete some task small or big does not really matter, just know that what you have to give is important in the whole bigger picture.

Rev 2- We all have our opinions on how people should be, how they should react to any given situation, how they need to live their lives because let's face it we want things to be our way or...
Uh huh - wake up call... We all have our good and bad. Only if one experiences the bad can one appreciate the good and vice versa. The biggest thing that mars or destroys any relationship, no matter what kind is "Expectation" Huge ramifications. We all have it, me included, whether we acknowledge it or not, whether consciously or sub consciously we expect something in return
and it flusters us when we do not get it. I think a lot of us will find peace and happiness when we let go of "expecting" something in return and just do things because you want to and not because you have to.

Rev 3- Pride, Ego, Trust, Fear, Vulnerability, Failure all govern our lives.
Pride - We all have that some more than others. It is, intertwined, with ego and fear, failure and vulnerability. We feel that if we do give in or acknowledge our weakness that it makes you inferior...but I personally think it only helps and how? Here is my take on it:) Pride and ego just get in the way of one achieving or getting what they want. Because of those emotions, we refuse to look at the problem from all angles. We are so overwhelmed with the way people perceive us that most if not all actions are governed by that.

Most of our actions are done with the fact in our mind, consciously or sub consciously, we all hunger for appreciation, accolades, applause, compliments, motivation because that gives us the impetus, the incentive to try harder. It is innate in our psyche to be appreciated and as that should be. That is the simple reason why a compliment, a positive comment brings a smile on our face.

Such a simple yet profound revelation I had was this. All it really really takes is a genuine heartfelt compliment, comment, smile, hug, to make the other person feel special. And you know what the kicker is....making the other person happy is guaranteed to put a smile on your face, a spring in your step. Don't believe me? Try it....Compliment a total stranger, smile, hold the door open for someone, help someone who is not expecting your help, surprise someone with something special, pick up the phone and connect. It is a wonderful feeling. Truly it is.

Tuesday, July 20, 2010

when is it enuf?

When is it enuf? When are we going to be satisfied with what we have achieved? When are we going to find that all elusive contentment, peace and yes happiness?

What is enough really mean? Food to eat, Clothes to wear, roof over our head? Hmm maybe some designer clothes, gourmet food and a mansion, later? Oh well, not really because one's heart always yearns for more, and let's face it , that is the reason the economy exists, right? Because if we did not want the finer things in life, then we would not have had the cavair, truffles, pate to eat or Gucci, Tiffany or Hermes to wear or those huge home builders or those expensive cars!

Good old peer pressure, huh? Where would we be without that? Hmmm , complacent and happy, but that is not how it happens does it? Just when you think you have reached a particular goal and you heave a sigh of relief and look around all you see is empty spaces as the others have moved on, egged on by their own peer pressure.

Peer pressure is good as long as you rule it and it does not rule you. It keeps you on your toes and moving, but the danger lies when you let it eat at you and mope and fester. Negative feelings, thoughts and actions abound and multiplies.

God forbid if your peer is doing better than you, and you waste your time and energy in trying to find out why, instead of focusing on your goals? We always say to ourselves - Oh when I achieve this - I am going to be the most happiest person, but I guess what we do not realise that by the time we do get there time has flown and things have changed and you have to recalculate you r goals again....

Peer pressure. It is what gets us going. It gets us moving, gets us motivated, gets us frustrated , makes us unhappy with our lives. I guess it is all in the perspective and whom you compare with. If you compare with someone who has less, you feel better, if you compare with someone who has more you feel bitter. Better or Bitter it is your choice.

In closing it is within us to decide what one needs to be happy. Life teaches us that. In my case health because health is wealth. If I was healthy it would be something else:) We are forever trying to reach the topmost fruit in the tree not realising that the fruits that hang low and heavy or have fallen to the ground are the sweetest:)

Are you happy? Really happy? Seriously????

Tuesday, June 8, 2010

My life's path

As I was ruminating and reminiscing about why and how my fascination for media/entertainment began I realised it was always a part of me since childhood. It started off, I would say around the time I was maybe 11 years old. I had this idea of doing a variety show and so I went about gathering friends and people who would be interested.

I rounded up a few kids ..most of them younger than me and we set about planning an entire show which comprised of an introduction, singing, dancing and one act plays. Rigorous practice sessions, costume decisions, flow of the show, props for the show, venue, invitation cards, setting up the stage, allocating responsibilities and following up to make sure everything was in place. Then cajoling my mom to make tea for 50 odd invited audiences and snacks for all of us. Dad would help in setting up the stage by putting in extra lights cleaning it up helping us put up the curtain for the stage and the stage was? The terrace of coz:) And my brother the all important job of a gatekeeper.

We wanted to keep uninvited guests out:) Only those invited were allowed. We had one of the parents or someone as a chief guest and have them cut a ribbon, throw some confetti and glitter and start the show off with a bang:) Nervous anticipation, excitement, anxiousness and after everything went smoothly immense satisfaction... real heady emotions. This became a regular feature and we did it for a few years, becoming increasingly popular, audience increasing, parents recommending that I give their kids an opportunity to be a part of the cast.

We had our usual bickering, tantrums, walk outs, tempers frayed, as well as excellent team work, ideas being bantered about and most importantly loads of fun expressing our creativity and building up our confidence level. This set up the basis of production experience.

From there we moved on to a bigger stage, that of our colony/community stage with an audience of several thousand and plays ranging from one to three act plays:) I still distinctly remember the adrenaline rush as I stepped up to the mike...absolutely addictive.

Then I had just finished my tenth grade which was high school and I chanced upon an ad in the paper from All India Radio asking for talent for the English Youth channel they had. I discussed it with my dad and sent in an application. I was called in for an audition and got through it the very first time and from there on began my love affair with the electronic medium.

I continued that for several years maybe around 14 years till I got married and came to the US. One of my most cherished part of my life. It was because of that I had applied to Jamia Milia Islamia in New Delhi, the top journalism school in the country. I wanted to continue in the media stream. Not everyone could write the entrance exam. You had to be invited to write the exam.

I still remember the day that I received a telegram telling me I am eligible to write my entrance mostly because of my radio shows that I was doing. I went to Delhi to write the exam. I was told that more than 4000 people had applied out of which around 350 were called for the entrance. We were competing for 4 seats that were in the open category:) The first part of it was a four hour essay writing test, which I got through and made it to the next round in which we were shown movies and were asked to critique them. Was shortlisted from that and was among the very few who made it to the final interview stage. Was excited and nervous and got ready for the interview earnestly. While on the way to the interview got caught in a downpour and got got dripping wet:( Tried to dry off as much as possible, but when I walked into the air conditioned studio to meet the panel my teeth started chattering and I started shivering...maybe from cold or nervousness? Anyways bottom line did not make the cut. Needless to say was hearbroken, especially when I had heard that the new guy from the serial Fauji was also a student in the university. A guy called Sharukh Khan:)) Oh well!

Came back dejected, then went on to complete my Bachelors in Commerce and meanwhile continued with on air radio. Did everything except singing:) After graduating from college went on to work in the marketing department of a computer company, got married and came to US in 1993.

Got busy for the next few years settling down and assimilating, learning hard life's lessons without our family or parents to shield us:) What a shock it was to face real life and coming face to face with the ugliness, selfishness and yes also kindness and support. Was a very eye opening or should I say eye popping experience:)

Still held on to my dreams and to that effect joined a radio broadcasting course in DC. Learnt a lot about voice modulation, doing commercials etc. Again had a wonderful time going through the learning process.

Through the school I got to go to an open call for interns. This was for WUSATV 9 a CBS affiliate in Washington DC. I walked into the room full of anticipation which turned into apprehension as I saw room swarming with candidates. The fact that it was an unpaid internship did not seem to deter anyone. I was the only Asian and among a smattering of minorities:) But I did not let that frazzle me and gave it my best shot:)

Wonder of wonders I got selected and also got to intern at my top pick which was Creative and Promotions. From there I was also selected to intern at the BDA/PROMAX convention which was being held in DC that year. What a year that was! Absolute fun...

Then also went on to do internship at MIX 107.3 FM a top radio station which was part of ABC/Walt Disney.

I had the offer of jobs in both the places but could not take them up due to my visa situation:(

What a bummer. Life took over after that and went on to work in corporate America after that for about 10 years.

During that time I was also involved on a part time basis with an indie film called "Wings of Hope" directed by Raj Basu. Was involved in the entire life cycle of the film from pre, prod to post.

The bug of creativity once in your blood does not go away....

Later I discovered new media and started blogging, video blogging and podcasting....

I am a geek and a nerd and love to learn new things especially anything related to creative area.

So I made my own website, wrote the content, handled the camera, recorded, edited and uploaded. Did extensive research and learnt some cool stuff. Am a gadget freak and yeah love electronics. Seeing wires makes me happy:) I can spend hours trying to connect and reconnect wires and see the results:)

Time has flown by, Life has gone by, dreams still remain, waiting to be fulfilled for the ultimate high, the ultimate goal for which I have been in preparation my whole life....

I live, breathe and will one day achieve my dream. After all I have been working towards it my whole life without even really realising it..

Tuesday, April 20, 2010

Parkinson's and lesson's learnt

I still remember vividly my appointment with the "Movement Disorder Specialist" in Johns Hopkins - It was end of May of 2004. Hearing the diagnosis was both a relief as well as disbelief. Relief, knowing that I was not crazy, that all those symptoms I have been having, actually had a name and that even if all the diagnostic results came back normal, there was something really wrong. Disbelief, shock, a surreal feeling because this was not supposed to be happening. It was supposed to be something for which I take a few pills and I magically become healthy...

Well it has been almost 6 years and reality is setting in. It has been 6 years of not only physical, but emotional and mental hell hole and guess what only going to get worse.

Parkinson's is an insiduous condition, very stealthy, sneaking into your body n mind and by the time symptoms manifest more than 80% damage is done. It is like dying slowly each day and utterly demoralising, humiliating, frustrating, guilt ridden and the feeling of utter helplessness.

All the things I had taken for granted, now became laborious, simple tasks, daunting. The decline has been gradual but definite each day taking away a little bit of me.

It has also taught me a lot about me. i learnt that i have the strength, the fortitude and the attitude to try and deal with it. It helped me look at life in a different way, made me realise that there is more to life than the constant bickering and negativity we surround ourselves with...

I have learnt that life is unpredictable, that one needs to treasure the good moments and try and let go of bad moments.

I have realised that my stubbornness or will power is actually a good thing as I refuse to give up or give in. It helps when I am frozen and my feet and body refusing to cooperate- I focus inward and gather my mental reserves and will my body to move and even though I am dripping with sweat at the simple process of putting one foot forward, when I do it, have a sense of satisfaction like no other. One little step at a time I can do it. If I cannot walk, I crawl - getting up close and personal with the carpet.

Sense of humor, being able to laugh, as you fumble and stumble is very important so when I shuffle I am Happy feet, when I sway - my drunken walk and when my body is shaking so much that the chair I am sitting on is vibrating - well that is when I am electrifying:)

It is ironic as I yearn to be able to do simple things like running errands, drive my kids to acivities, grocery shop, cook etc. I still do it, takes me some time but still do it. Especially when my meds manage to fool my body into thinking everything is OK I can take on the world and I can feel the off moments coming on - time to pop the pills.

My day is broken up into "On" when my meds are working to "Off" when my meds lose their effect and time to pop more. Do these pills help?

The pills help in helping me have a life while I can. No it does not take care of the condition, the ravages to the mind and body continue - there is no cure - yet. The pills, while they have side effects, that have prompted law suits, at least buy me some time of normalcy - whatever normal means.

Over the course of my six years with Parkinson's I have come across different reactions, lots of comments, observations. A lot of them genuinely concerned, some concerned, but unable to articulate, some curious, some merely polite but mostly supportive.

There have been a lot of rude and insensitive comments. Some on purpose some unknowingly.

Most common is Well atleast it is not Cancer - True! absolutely thankful as it cud have been worse. But that does not make it any easier to deal with it.

Another one is comparison- I know of someone who has ten diff conditions n is still doing 20 things so why do u complain? Well we all have different tolerance levels and deal with life's curve balls in our own way. Some have a low threshold some higher.

It is all in your head- you are making it a big deal...Well Yes it is all in the head, and Yes it is a big deal...
brain cells dying, unable to move, losing cognitive functions, unable to talk...duh

Another - and this is my fav - U use ur condition to gain sympathy -- LOL. Please tell me what the heck do i do with sympathy? Will it make it go away? Jeez! If gaining sympathy would help my condition believe me I would be very happy. There are people who are not comfortable sharing and then there are people comfortable sharing and that is me. I have had several incidents where my tremors were mistaken for nervousness, where my slurred voice mistaken for something else, so I, no matter who, in the conversation let them know that I have PD. Not for sympathy, Empathy I wud not mind, but because if there are some symptoms at least they know there is a reason.

For me, the passing of time, holds new meaning and so I am aggressive with what I want. I dont know what tomorrow holds so I try and push it for today. Lot of people do not understand the need and I am sure I have offended a lot of people. It would be nice if I could have the luxury of time. The need is desperate to do something while I still can.

Photos are another thing that has become important, especially good memories, pleasant memories, I am hoarding them up and I have been known to be a pain in the hindside:) asking people to make sure I get copies of my pics.

You may ask - Sutapa - if your condition is not good then why should we take a chance on you and why
should we put our money on you.... Very understandable and very viable - Here's why.....

First and foremost you will be helping me achieve my life long dream - so you can be rest assured that my very best efforts will be there, and the way I look at it is, if I can still get up each morning and approach the day with a smile and spring in my heart, with the hope that I can do it and will do it, and do do it, if I can still maintain a positive attitude and even think of doing something with my life, have a craving to make a difference in people's lives, deal with not only the physical but emotional issues headon then I know I am made of tough spirit and not many people have that.

Would you still want to do something with your life, when you try to get out of the chair and realise you cannot move, when you try to turn in the bed you are unable to move, when you try and stand up and your legs give away because there is no feeling and you have to crawl to reach where you want to go and even that is an effort, when you try and put a foot forward and it refuses to budge, when a simple task of changing your clothes or brushing your teeth or buttoning your shirt becomes a daunting issue, when your child cries for you, and you are unable to get to them because your body refuses to move, when your eyes close and refuse to open and the only option is to have botox shots on your eyes every three months so you can see, when your child asks you to make something and you cannot, when your child wants you to volunteer or go on a field trip and you have to say no, when you are compared to others and found wanting? Would you?

I can sit back, moan and complain, take it easy, live my remainder of my life having things done for me, BUT that is not me. I still yearn to do something and have done a lot of big things inspite of being bogged down. I still continue to do so and will do it till I am absolutely unable to do it. I can do it and I will do it. I M POSSIBLE!!!

Monday, April 12, 2010




Sunday, March 21, 2010

Pleasure in life's simple things....

A simple line but a complicated result?

Seriously how many of us take pleasure in life's simple things? We are all so wired up to go somewhere, do something, achieve our goals, fulfill our desires, complete our to do check list, catch up with our peers, make the million dollars and after that the next million....

And by wired or should I say wireless:) literally we are bombarded with messages, im's, sms, voicemails, emails, tweets, etc etc. And now we can browse the internet on our mobiles!!! Gasp! Help me I am addicted - have to check my emails - whether they are to enhance certain body parts-it's a diff thing that they are targeting the wrong gender, or the latest, most happening sale going on - that OMG is ending tomorrow- hmmm wait did it not say so in the email last week... oh never mind gotta go and check it out, lest I miss out on a deal!! or the latest in chain emails that promise dire happenings if you do not forward that email to 10,000 other friends, to checking my IM's, social networking sites.....PHEW!

Excuse me - uh where the heck do I find time for simple things, to smell the roses, or to feel the raindrops on your face, or to inhale the scent of the ground after the first rain, or freshly mown grass, to drink and savor my morning coffee, to read a leisurely book - what if while I am doing that I miss out on the next happening thing....Jeez...

As it is we all have busy schedules, things to do, goals to achieve, catch up with our peers, buy that house, get that new car and oh yeah the latest gadgets.... just when you master one - they become obsolete and you realise you are two versions behind...more catch up to do.... I can go on and on but you see my cell phone is vibrating urgently telling me I have new email - so gotta check it out..... Darn is that raindrops falling on my window- do I go outside to feel the rain on my face....maybe later need to check my email......

Monday, March 8, 2010


Life is many ways a circle - you meet with some people- grow apart- several years later- reconnect with some-find synergies where there was none before-find disconnects where there was connection-nostalgia-memor
ies a feeling of traversing a lifetime, a feeling of wonder, recollections and amazement as you realize that different people in different stages of your life have their own memories and what they remember about you and how they view you.

As you piece together the chain of memories and recollections of the people you have met as you trod along life's path you come across some common opinions, memories, recollections and realise that that is what you are at the basic core of your heart because that does not change. No matter how old you grow and where you are your basic nature remains the same, it is the layers you add on to as you go through life, physical, mental, emotional that changes with time and colors the perception of the people you interact.

It is indeed fascinating to see if you have progressed or regressed, the constants and the variables, the perceptions and as you look back at your life, the choices you made and how far one has come and what kind of memories one leaves behind, positive or negative,

Memories - some can leave you feeling good some not so good - so you take the good ones and you weave together a beautiful mosaic of your life for you to comfort you in your dark moments as you relive them and they put a smile in your heart as they are yours and only yours to treasure:)

Thursday, January 28, 2010

Life's lessons learnt:)

So I believe that every day is a new day and we get to learn new things, be it a new word, a new phrase, a new trick, a new way to do something, something new about you as a person, or something new about a person in your life:)

Life they say is a journey, not a destination and as we go along on this incredible journey that really has no roadmaps, and has hidden surprises round every bend some good, some let's say not welcome. Don't you find that just when you get comfortable, think you have a sense of direction, have your goodies for the journey and have your goal - bump - ooops a speed breaker....so need to adjust the travel plans a bit.

Along the way you pick some fellow travelers and we may not know it then but they are all there for a reason - maybe to point you in the right direction or maybe the wrong, some there to let u know what your strengths are, some that make you rethink your destination, some to create joy and some sorrow.

We may think we have a choice but really we do not. It is all determined by the great wire puller. We need to recognise the signs or we get lost and confused.

As we go through this incredible journey we call life, I think it is extremely important to keep an open mind and heart, to welcome change, to be willing to learn, to experiment, to explore, to taste, yup sometimes even detours - who knows maybe u will find your paradise there? Or your oasis which you would not have if you decided to stay on the path and yup you can also get lost and end up where you don't want to.... it is all a matter of taking a chance.

As they say you never know till you try it:) Life has so many flavors, so many varieties, so many colors, so many choices, so many options but we limit ourselves with this self imposed restrictions because we do not think it is the right thing to do.

And we may possibly miss out on some incredible experiences or scenic views as we continue on our safe path.

Life is short and unpredictable, full of challenges, happiness and sorrow, good and bad so while on the road of life - put the top down - of your car, feel the wind in your hair, the drops of rain on your face, the smell of fresh mown grass, smell of wet earth, belt up and get ready for the unexpected and have an adventure!

Here's to lots of laughter, giggles, snuggles, joy and fun - Let your inner child out Run free and have a tumble or two....Cheers.