Swirling depths of darkness

Swirling depths of darkness
dark and ominous
grim and foreboding
waiting to suck you in

heart thudding away
head feels like caught
in a pincer's grasp
body restless
mind a flutter

eyes shutting
parched throat
tongue sticking to the
roof of my mouth

my body a jitter
nerves a jangle
keening sound in the ear
anxiety ratcheting

the well of darkness
ready to grasp u in it's
embrace
dragging u into the
swirling depths of  darkness

But I say... I do not like you
I like my sunshine
I like my giggles
I like the wildflowers
I  like the gurgle of the stream

I want to feel the caress of the breeze
the kiss of the sun
I want my sunshine, laughter and love
that I know is waiting for me
in the yonder

I see blue skies
green grass
and yes hope
shining like a beacon

So I hang on tight
my eyes, heart, mind and soul
focusing on the light
hanging on for dear life
as i know if I am sucked in
swirling depths of darkness
getting out would be difficult

So with single minded focus
I pull myself out of the well of despair
grunting and grasping
bathed in a sheen of sweat

and as i collapse on the other side
a giggle forces through my throat
ecstatic that i was
able to free myself from
the swirling depths of darkness

shud I givein??

Heck no!... am obstinate, stupid and yea optimistic:)) Otherwise wud have given up ages ago....What I did before Parkinson's (yup that is how i look at life now..before n after) seems a lil blurred... so am trying to recollect what i did post PD...

As i was still in the 'honeymoon' phase of my condition, physically was OK, emotionally a mess... but co-ordinated our move into our present house which we moved in,in 2004, then next year, we bought two rental properties, one totally on the internet:P.....so I did the research, found the realtors, etc etc basically took care of most of the myriad things needed.

Meanwhile, also tried some online business, became a bargain hunter,am known for scouring the net and getting incredible deals, downloaded and learned diff graphics software....am a self proclaimed geek, love electronics,gadgets and always was busy trying to wire something or the other, trying to hook up and try stuff like streaming from Wii etc, using PSP for downloading music etc. Also did a lot of home projects, like painting a mural, making a headboard out of a door, a table out of a kitchen cabinet door....
And in the  midst of all this I was also trying to follow my dreams of broadcasting/acting connecting with ppl trying to sell ideas, blogging vlogging etc.... all this while dealing with PD and its effects...am i good or what??:PPP

I was in full blown denial, scouring the net for different conditions that i may have...made sure they were of the curable variety...did not want to have PD.... visited all kinda 'logist' docs, every single appt heartbreaking as all signs did point to PD... It was hell coming to terms with it...am not sure if i have yet....
I wanted a condition where I suffered for a while and got better, not this darn life long alliance!!...Meanwhile all the mind altering drugs were  doing their side effects thing on me making my life miserable.... Have hit the lowest ebb  in my life, really bottomed out... where i was ready to call it quits.... and from there painstakingly climbing the stairs of life one rung at a time....

i had managed to reach a certain place, when they decided that i need to withdraw from one drug, as it was creating problems...this was in Jan 2011...http://sukas-myworld.blogspot.com/2011/08/2011-year-of-finding-my-inner-strength.html is where I detail my struggle and the  battle still continues...have not yet recovered from that ordeal....

My fight continues, just seems that Parkie is gaining more and more control day by day....but i have been fighting it every step of the way...If my docs wud have it, I wud have had holes drilled in my head, i.e. brain surgery in 2011 itself, infact came home from the hospital  with a walker as i was unable to walk.... I have not touched the walker yet. Earlier this year they still wanted me to  go ahead with the surgery... let me see... honestly it petrifies me....

So my nights are sleepless, days are tiring and sleeping..basically zombie like.... totally out of steam, living each day as is.... need to get my fighting spirit back

So giving in is not an option at all, right:)))

So much easier...

So much easier to cry rather than laugh
So much easier to frown rather than grin
So much easier to fret rather than jest
So much easier to give in rather than go on
So much easier to forgive rather than forget
So much easier to grieve rather than heal
So much easier to advise rather than follow

So much easier to blame rather than accept
So much easier to fume rather than understand
So much easier to judge rather than be judged
So much easier to laugh at rather than be laughed at
So much easier to follow rather than lead

So much easier to condemn rather than commiserate
So much easier to find faults rather than good
So much easier to look down upon rather than look up to
So much easier to berate rather than appreciate
So much easier to belittle rather than compliment
So much easier to be part of a mob rather than have an individual thought

So much easier to be sad rather than happy
So much easier to fall rather than getup
So much easier to turn away rather than go on
So much easier to say I cannot rather than I can
So much easier to say IMPOSSIBLE instead of I M POSSIBLE

And we wonder why there is so much angst, negative vibes
anger, disillusion, unhappiness around us!!!

Remember I CAN I WILL COS I AM
Remember U CAN U WILL COS U ARE:)))

SUTAPAISM:))))

Is it me or??

Since I was a lil girl,
I whirled and whirled
happy in my world
parents who showered
me with their love
a brother with whom
I fought and played

Sweet, fun filled memories
and i think how lucky am I
as not everyone is destined for that

for the love and support we
take for granted
not realising how blessed we are

and yes that has made me a person
who has always been accused of
sporting a smile
a  skip  in my step....
a different person in school,
shy and unsure, yearning but cautious

but on my home turf i reigned
I was a doer, getting kids together
staging plays and skits and dances galore
organizing, producing, directing and staging
oh the adrenalin rush as I stood on stage
acting out plays, introducing characters...

I felt the same thrill when I first
spoke into the mike at the radio station
just out of my  high school
gauche and amateur
but bubbling with enthusiasm and fervor
getting the very first paycheck of my life

so many memories, so many experiences
so much to learn, so many mistakes, so much pain
so much joy, a lot of tears and smiles too

now as I approach my mid life
I look back and think
was I always like this?

Did I always have a smile in my soul
A skip in my heart
Hope in my eyes
Laughter in my thoughts
Chatter in my mind?

Did I always look up
and instead of seeing dark clouds
I see the silver lining running through it
playing hide and seek surely
being truant and ornery
but lurking there, just waiting to be found?

Did I always look at the rain
and instead of seeing the wetness,
the muddy puddles, dirt and grit
I see, refreshing elixir that
refreshes, rejuvenates, revives
bringing forth life to earth's parched surface?

Did I always look at life
and instead of seeing sadness and despairtears and jeers...I still wore my rose colored glasses
that the lasik surgeon did not remove:)
and still enables to help  me see life through rose colored lenses?

Did I always look at a person
and see what they are not, what they do not do,
what they refuse to accept and
see the innate goodness that every person has
within  themselves....just that they are
unaware of this wonderful gift within themselves?

Did I always look at a problem
and not see what i cannot do
but instead focus on what I can do?

As i ruminated and reminisced
I realised that yes the base and the foundation
was there, built through my childhood
the rest evolved as life went through

Just as we all do
learning and accepting,applying and living
nothing unique, nothing different
yet being unique and different...

And this is what I have learned
It is all about perspective
It is all about persistence
It is all about hope
It is all about fate
It is all about faith
It is all about optimism
It is all about being positive
It is all about being able to laugh
It is all about being able to accept
that you are not perfect and that is ok
It is all about being able to giggle at yourself
It is all about being able to accept that yes you do make mistakes
It is all about being able to accept that yes u can do what u want to do
because the power is within u
It is all about being able to say No to things and people u are not comfortable with
It is about being able accept that it  is not humanly possible for you
you to know everything and it is ok to admit it
It is all about being able to accept your limitations and your strengths
It is about having an open mind to learn from everyday experiences
It is about believing in you, your ability to do it
Cos if u do not then how will others believe in you????


Hmmm Is it me or???:))

My Parkie mornings:)

It is so easy to say...No I cannot do it
It is so difficult to literally roll out of bed
eyes half closed, toes tightly curled
arms stiff....as you lay on the carpet
laying there for a few moments in the
quietness of pre dawn, soft snores and the house
making those comforting noises...everyone
in pre dawn deep slumber
as you breathless, lay down on the carpet
mulling on how to straighten your arms
uncurl your toes, uncramp the cramp
as ur hands feel around for that pill bottle
the salvation it provides as your shaky hands
pour out the water, spilling some
then trying to unscrew the pill bottle
hands slipping, cussing, sweating till
yes bottle open....pop the pills
then begin the process of stretching and uncurling
as my cheeks lay on the floor I look towards the bathroom door
seemingly a planet away as I mentally start my pep talk

Cmon u can do it you can do it you can do it...
as I hold on to the edge of the bed
swaying like a drunk in the early morning hours
one feet up one knee on th eground, like a runner
I push myself to go towards the bathroom door....
to start my day....
Welcome to my morning:)))

Mr. Parkie

Here I was merrily skipping
along life's path,
with a song in my heart and
a dance in my soul
When I suddenly stumbled
Did not even have a chance to grumble

I did not feel the invasion
so stealthily it did happen
One moment I was skipping
And the next moment I was slipping

Mr. Parkie Mr. Parkie
U are rude and sneaky
U came in without a squeak
and made me unable to speak

u took over my body
pretty as u please
without asking
may i please?

Mr. Parkie Mr. Parkie
U are rude and sneaky
U came in and occupied
and i am petrified

U are on a killing spree
killing all my brain cells
U are in control of my
body parts shaking them
as u please

U took over my mind
my body but u ain't got my soul

No no no u ain't got my soul

Hey Mr. Parkie
if you think I am just
gonna roll over and play dead

u don't know what u got instead
I am gonna fight u
u uninvited guest
I am gonna kick u out
just u wait and see

may just be wishful thinking on my part
but it is my wish
and in that i can do as i wish

and i wish u go away far far away
Mr.Parkie....I do not need u
go away go away go away!!!

All about Perspective, isn't it?

Hmm so I was having one of those ruminating moments, you know where u sit back and try and evaluate your life and goals...yup really profound and intense:)) 

I have always wanted/want to do something in broadcasting, ever since my love affair with the radio began in 1983 or so when I started doing on air....I always had it in my mind that I would get to it eventually..as my life's goal....then came along my Parkinson's diagnosis, ironically believe it or not right at the moment when I was poised to take the leap so to speak...

When Ranai, my second, was born, I quit my job so I cud stay with him, and the plan was as soon as he was maybe 3 or 4 years old...i would try and pursue my dreams...and wouldn't you know it...when he was 2 years old, I got diagnosed...

As the diagnosis sunk in,well kinda, I had this desperate feeling of time slipping by, went through a lot emotionally, have written about it in another blog, so will not go into it here.

I began planning, conceptualising, thinking, writing and pitching , all this while I was in full blown denial, about my health, my kids little and fighting the skepticism that it was too late in my life to be thinking about a new career path....

Things happened, and my thots, my plans, evolved, when I through desperation, loneliness and frustration, started writing bogs and created a video blog, created my website....Creatvproductions is my baby through and through, a one person endeavour, a stubborn sense of trying to connect with the people....I am a self proclaimed geek, so I taught myself everything and did extensive research on the net, found and downloaded software, learned and incorporated that into my videos etc...

I have always been an early adopter and love to learn and am extremely proud to say that everything you see from my website, content, design, video, camera, editing, uploading, channel looks, posting videos on diff sites etc etc etc has been done by me...when I say I am the janitor and chief creator of Creatvproductions...'tis true every single word....

I did try the regular way, and here I do have to mention two people who came into my life and helped me make a pilot for a talk show, that we wanted to do. Vandana Gambhir and Bala Chandran, and a bunch of my friends who believed in my dreams came together and helped me  make a pilot basically spending zilch, just a lot of goodwill, love and best wishes...

When things did not go as we hoped, I started my Youtube channel.  The idea behind the channel was basically to create videos so that when I was pitching shows to broadcast houses, i wud have something to show...

I posted my videos on some other sites, my bogs on others....and when I look at my insights or stats I realise that I have viewers, readers from all over the world, messages, comments coming from people I never met, and I realised that slowly but surely , my thoughts were spreading, people were reading and watching and all this time without really realising it I was in a way fulfilling what I want to do, which is basically reach out to people.  I am so focused on trying to get into the mainstream that I did not realize that I was reaching out to people via the new medium, internet.

With a very approximate tally, I have reached maybe more than 70,000 people with my written, and video blogs, with zero dollars spent  on marketing, just my stubborn determination and persistence.

Who says you cannot do it? When one wants to, nothing is impossible.  There are tools out there....Not only am I fighting a nuero degenerative health condition, trying to raise two boys, but also trying to prove to me and the others who said I cannot do it, that yes you can, you will cos u are!

I WILL, I CAN , I AM!!!!

http://www.youtube.com/user/creatvproductions?feature=mhee

Parkinson's by Rishab

Well, the way I describe Parkinsons is a disease which doesn’t express yourself to the fullest, it limits your abilities. This is what you have maa, and I know it is hard to live life. You have us though, and we will help you trough the hard times.

                I really don’t like Parkinsons, especially since my maa has it. I remember on our vacation to Duck, maa was feeling bad for most of the trip. I felt so bad that maa didn’t get to enjoy the trip. As I said earlier, Parkinsons doesn’t let you live to the fullest. Maa didn’t live to the fullest on that vacation.

                I’m so glad that maa doesn’t have advanced Parkinsons, or she would be shaking all the time. Some of the most famous people, such as Michael J. Fox, and Muhammad Ali, have Advanced Parkinsons. They cannot even walk straight. Even the most infamous people, like Adolf Hitler had Parkinsons. Parkinsons is not an uncommon disease, but I don’t know why it had to happen to maa.

                I thank god that Parkinsons is not fatal. I would do anything to get maa out of that disease, even if it meant waling a thousand miles. She is the best mom ever, and she acts so nice and caring around me. I especially like our text conversations. Maa, I love you, and I would do anything in the world for you.

Parkinson's by Ranai

( I had asked Ranai my 9 year old to write what PD means to him and this is what he said) 

Parkinson’s

Parkinson’s is a disease, a brain disease .Parkinson is a type of brain disease, and many people suffer from this disease not to mention my mom. :( . Parkinson’s is a type of disease of the brain, you‘re not able to move so fast and you are not able to really well play sport etc.

Parkinson’s is a very strong brain disease, it is so sad to see someone like this it is not a good sight. :( .I think personally that it is not fair that my mom has this because she is so loving and caring it is not fair! I don’t even understand why there are diseases it just makes someone suffer. (tebowing for a brief moment).

I really think diseases such as Parkinson should be erased. I wish that all diseases had a cure already but Parkinson doesn’t it is sad! :( .Well I told you how I feel about Parkinson’s and other diseases.

Oh dear! My brain's gone AWOL!!!

Those darn dopamine cells.... sure do have a "mind" of their own.  Doing the vanishing act without asking you... I mean how rude is that.... and they decide to let u know after a majority of them decide to quit ... yup about 80% of them.  I mean are they not bound by work ethics..like giving you some notice or heads up that they want to quit? Hmm wondering if I can sue them....Lawyers...any takers?

If you are wondering what am I ranting about...here's the scoop .... I have been diagnosed with Parkinson's in 2004 when I was 36 years... and Parkinson's happens when the brain cells that make 'Dopamine" die and are not reproduced....and what does "dopamine" do... well it is responsible for all your cognitive, emotional, and motor functions, also speech, thought etc....

And 'cos I did not want to believe it my doc let me take pics of my brain.... I mean, I love taking pics of me..but this..hmmm and that too in full color no less... Did u know your right side of brain controls your left side of the body and vice versa...I did not till I saw a nice color pic of my brain. My tremors started on my left side, so my right side showed an alarmingly low count of cells and my left side of the brain had also started on it's drain.....Dang.. This was in 2006 I think.

So here is my rationale, my own skewed version of why I have Parkinson's:) Are you ready to hear it.... Brace urself...

See I am bad enuf with only 10% of my brain functioning....can u imagine what wud happen with the rest 90% being functional? :) The world is not ready for me yet:)) Sigh tough being smart and beautiful, oh yeah and very modest too:)))

http://www.genomenewsnetwork.org/gnn_images/news_content/12_01/Parkinsons/Parkinsons_2.gif

No, this is NOT a picture of my brain:)) I took this off the internet