sukas-myworld.blogspot.com/...
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
My Wife has Parkinson's too.
Thiamine hcl update
Lonely
What PD has given me.
The many symptoms of PD
