My Doctors are telling me now that I am coming to the end of my relationship with chemicals as a method of dealing with my parkinson’s. They are saying that my only option is a procedure called DBS or Deep Brain Stimulation - brain surgery. This scares the hell out of me.
Basically the surgeons plant electrodes deep within my brain connected by wires that run to a device implanted under my collar bone. That is a very basic and simple description - it’s really quite complicated and I honestly don’t understand it fully. My ignorance is one of the causes of my fear, it’s human nature to be afraid of things you don’t understand. I am in the process of reading all I can about it, talking to people who have had it done and asking my doctor and others all the questions I can think of. By eliminating my ignorance I should be able to dial down my fear. I hope so. But, it’s still brain surgery, and it scares the hell out of me.
I find it hard to believe that this is my only option. I know how surgeons think - If the only tool you have is a hammer then everything looks like a nail. I am walking a tightrope strung between medical science on one side and my emotions and intuition on the other. What’s below me I don’t know - I only know I don’t want to fall. As I walk this rope, I also will search for alternatives within the conventional medical community and outside of it. Why - because it’s brain surgery and it scares the hell out of me.
I the few dreams I have had about DBS I always wake up dead - this doesn’t scare me. I am not afraid of dying. It’s the stories of individuals who wake up worse than they were before - they can’t feed or wash themselves - they can’t walk - they can’t talk - they can’t laugh - they can’t smile. This is what scares me, for that would be worse than death. That would be a living hell that I refuse to endure. There must be some form of “living will” that I could write up that would say “If I can’t feed myself then no one else can. I should be allowed to starve to death."
Since I’ve never starved to death myself I looked up whether or not it was painful and I surprising found out that most experts say it isn’t - it seems to b a very natural and peaceful way to go, Here’s one quote...
“What my patients have told me over the last 25 years is that when they stop eating and drinking, there’s nothing unpleasant about it — in fact it can be quite blissful and euphoric,” said Dr. Perry G. Fine, vice president of medical affairs at the National Hospice and Palliative Care Organization in Arlington, Va. “It’s a very smooth, graceful and elegant way to go.”
I Will Not Be Turned Into A Newt
But my death is more or less a non-issue, for I am not giving up that easily. I am nowhere near to being ready to pass on to the next life, and until I am I plan on fighting with every ounce of my strength this unwanted change of the guard. I’ve heard the phrase adapt or die. That is my motto - my mantra - my muse. And if anyone can kick mr parkinsons butt back to 19th century England its me. I don’t know if you know me, but I am one tough soldier. I am never giving up - never giving in. I will fight him when I’m awake - I’ll fight him when I’m asleep. I will adapt and change until some other natural cause takes me to my final reward. I am the greatest - I am one tough soldier.
I’ve started writing a daily affirmation on the walls of my studio - mostly positive, encouraging statements that help me through the day. I feel that everyone should do something like that, it helps me keep my eyes on he prize., and that prize is life. As long as I keep feeding my soul with hope and faith - love and laughter. As long as I continue to exercise and stay healthy. I'll be able to feed my body with food. I will not go quietly into the good night. I am one tough soldier.
NEXT TIME ON ANDY’S WONDERFUL LIFE
Next time - in the book that is my life are my best years ahead of me or behind me. Kathleen is, of course, the main and most important person in this book, but is the chapter titled Rachael the first or the last. Join me next time and find out.
Love to all of you,
I was having a discussion with my musical partner Rachael Levin the other day about which Beatles album was the best. Rachael, despite her young age, grew up listening to the Beatles (we must blame the parents) and probably knows more about them than I do. Heck, I’m sure she does. She said Abbey Road - I said Sgt. Pepper. I said something along the lines that it was all determined by where and who and what you were when you first heard it - she rolled her eyes and we moved on to something more important, like lunch.
Well Rachael, I think I might have changed my mind. This morning around mango-mango I listened - really listened to the last Beatle album Let it Be as it should have been produced, with out the Phil Spector “Wall-0-Sound” over done LA crap. I couldn’t believe it! I’m not going to get into the specifics, but I have changed my mind. Move over Abbey Rd, - Sgt. Pepper...I’m starting to feel that Let It Be (naked) is the superlative Beatles album - the best, the best Jerry.
Take a listen and tell me what you think.
I waiting to hear what Rachael thinks,
I really mean morning - it’s 3:59 am. I slept a solid six hours. Yet I still feel like a jerk. BAD IDEA. I won’t talk about that. Maybe I’ll go downstairs and make a cup of coffee. GOOD IDEA? They now say coffee is good for you, but they say a lot of things. I’ll be right back... I’m back now with coffee and yes, that was probably a GOOD IDEA. I’m now putting my newly awakened - caffeine enhanced - Sinemet fueled thoughts down for all the world to see. GOOD IDEA? or BAD IDEA? I think only time will be able to answer that question.
As if time really cares.
What makes an idea Good or Bad? I just took the time to count and I have, on average, about six ideas a minute. These range from the randomly asinine to borderline genius - you could say some are GOOD IDEAS and some are BAD IDEAS.
Here are some up to the minute notions
Some of these I have had before, old ideas keep putting on new outfits and taking another walk down the runway. I can only guess that I am still trying to determine which category they fall into - GOOD or BAD. I guess what is on my mind though is the bigger question, the much bigger question. Am I still capable of making that decision?
Only I have the right to answer that, but it will most likely be answered by others. I might be completely surrounded by loved ones, but I am totally alone on this - we are all alone with our ideas.
The reason that question looms so large over the entire landscape is that is is basically the essence of life. When presented with an idea do we go with the good one which insures success of do we go with the bad one, guaranteeing failure. Once we lose the ability to distinguish GOOD IDEAS from BAD IDEAS the end is not far away. Which, by then, might not be such a BAD IDEA.
Your IDEA man,
About the Author...
The color of today’s post might seem slightly grey - there is absolutely nothing wrong with that. Everyday cannot be sunny. You can’t be happy always. And just because you say you are ready to die does not mean you are suicidal. I love my life and myself - that is a constant - somedays I just don’t like myself as much as I should - just like you.
To whoever finds this message in a bottle,
If found please forward by post to...
Kathleen N. Westchester
456 Surrey Rd.
It’s been exactly nine years and 53 days since God saw fit to place me in my current situation, removed from my home and loved ones, placed on this island of cactus and sand, my Island Forgot. I’ve adapted quite well, I must say, ingeniously providing myself with the basic necessities and even some luxuries as well. But yet, I still miss my home - I miss my wife - I miss England. It’s lonely in this place - my Island Forgot. These messages thrown into the sea are my only hope, they give me strength, and enable me to carry on.
I ask you to forward this because my main hope is that these letters taken from my soul will reach my wife - Kathleen. I’m quite familiar with the currents and trade winds at this latitude and know this is indeed possible. She could very well read these words, sitting in our apartment in San Francisco, in three weeks time - this is what I tell myself - this is what I know can be true. So I write to her and it is public - all can see. But this reassures me, my love is for all to see. My prayer is that she is among them. This is for her...
My dearest Kathleen, you are the love of my life, my memories of you have been my only reason for getting up in the morning - my daily bread - my bedtime story. I wish I could be there to stare into your beautiful blue eyes like I did every day for a painfully short 5 years - eyes so deep and wise - loving and kind, yet strong and determined. Traits you have passed on to our two children. It’s hard to believe I do not even know the name or gender of the child you were carrying when I left for sea. I wish I could have been with you, but a Captain goes where he is told to go. I hope it was and uneventful birth and that you are both well. Say hello to Oscar and give him all my love. I miss all of you and think of you every day.
I write to you with faith, for I know you are a vibrant young woman, faith that you have not found a man to take my place, but I understand if you do. The world is a lonely place and one does what one has to do. My only wish is that you are safe, healthy, and happy. The rest I cannot worry myself over. For, worry keeps my mind off of my job, and that job is to be rescued from this Island Forgot and to be back in your loving arms and heart where I am meant to be. I promised to always love you and I always will. I long for you, I crave to hear the sound of your voice and the sweet soft touch of your lips. I long to be able to stare at you while you are sleeping. Your breathing is music to my ears - and the wind through the trees brings that music from you to my not so lonely Island Forgot home.
Words aren’t enough to describe what you mean to me
Words aren’t enough to describe what I mean to you.
Words cannot describe my eternal love for you.
Words cannot describe your eternal love for me.
And with that I say goodbye for the day - The sun is coming up and I must go now and start my daytime signal fire and check my traps for fish. May God be with you and please give my dear mother and sister all my love and tell them not to worry, for I am healthy, safe and making the best of a bad situation.
All my Love Forever and Forever,
Your beloved husband,
Reginald P. Westchester
Good Morning Kids!
Imagination. Where does it come from? Are we born with it or is it learned? Is it really that important and are we as a culture losing it? These are tough questions with even tougher answers - truth hurts.
It is my belief that imagination like talent is something you are born with varying degrees of, but it must be developed. Just as I might have been born with certain amount of musical talent, I did not come into this world already able to play the piano. I had to learn. Imagination is the same, it must be learned - nurtured - developed in order to reach it’s full potential.
Is it important? Here’s the dictionary definition of Imagination...
"the faculty or action of forming new ideas, or images or concepts of external objects not present to the senses” in other words the ability to make something out of nothing. All creation must first start with imagination. If this is true then imagination is probably the most important skill a human can possess. Without it we would still be living in trees. That answers all but the last question posed in the first paragraph - are we as a culture losing our imagination. I saved the toughest for last.
When I was a kid we simply called it playing. We used our imaginations constantly. A small patch of woods with a stream running through became a deep dark jungle with a raging river. An old sofa found in a vacant lot became a cockpit for us imaginary astronauts to take an imaginary trip to the moon. Old toilet plunger - stick shift for an eighteen wheeler - girls had their tea parties boys our medieval jousting contests. We didn’t call lit imagination we just called it playing.
21st century technology has changed that, i believe. Children are being taught at increasingly younger ages to utilize this technology in every aspect of their life - relationships - education - and play. By doing this we have allowed them to replace real relationships with virtual ones fueled by moving electrons instead of emotion. Education limited by Wi-Fi access instead of the desire to learn. Real play created by imagination with corporate greed and the desire to sell the latest profit making device.
Sure the ability to operate and understand the latest gizmo is important but if you replace it with the development of the imagination, you lose, society looses. Not the super rich 1% of the population that controls the other 99% for this is what they are hopping for, but the rest of us - the 99% who are having their imagination and ability to create slowly removed from their minds. So slow that they don’t even notice it happening. To paraphrase singer songwriter Grant Peeples “You can’t start a revolution with your face 6 inches from your smart phone."
Turn off your TV - your computer - your smart phone - every device you own for at least an hour a day. Try it, I am right now after i publish this blog. And I will do it everyday from now on replaceing Silicon Valley with Imagination Avenue. Try it - I dare you. Let me know how it makes you feel and I will do the same.
Until next time
Your imaginary writer,
I will leave you with an exercise of imagination - if you can do this then there is hope for us all.
Imagine there's no heaven
It's easy if you try
No hell below us
Above us only sky
Imagine all the people
Living for today...
Imagine there's no countries
It isn't hard to do
Nothing to kill or die for
And no religion too
Imagine all the people
Living life in peace...
You may say I'm a dreamer
But I'm not the only one
I hope someday you'll join us
And the world will be as one
Imagine no possessions
I wonder if you can
No need for greed or hunger
A brotherhood of man
Imagine all the people
Sharing all the world...
You may say I'm a dreamer
But I'm not the only one
I hope someday you'll join us
And the world will live as one
Good Morning Everybody.
You might remember the old commercial for Almond Joy and Mounds candy bars - “Sometimes you feel like a nut, sometimes you don’t..." That applies to this blog - "Sometimes I feel like writing, sometimes I don’t”
This morning I feel like writing.
I posted on facebook a quote I made up yesterday and got a nice response. Thank you fellow citizens. The funny thing is that the nugget of thought came to me during a dream and I really have no idea what it means...
" I feel you cannot learn what music is,
only what music means.”
Wha? Huh? what does that really signify? It could just have easily read “...you cannot learn what music means, only what music is. Do they both mean the same? Or are they only the random synaptic activity of a sleep deprived student of life. There must be some universal meaning to this quote; it sounds so profound. Let’s dive in a little deeper. If you get sleepy, put your head down on your desk and take a nap.
To help me deconstruct this piece of profundity I’ll use some of the responses I received form the original post
I don’t know if that helped anyone. Maybe if someone a whole lot smarter that I were to explain it ... Right now, however, I am the smartest person in the room - I am the only person in the room, so let’s pretend that I am smart and it’s my job to make you understand. Use your imagination.
You cannot teach what music is because no one knows. Sure every junior high school teacher knows the physical explanation - frequency, loudness, arranged and organized noise, but that doesn’t tell you what music is, just like saying I am a bag of skin filled with mostly water. That explains what I am made of, but not what I am. What is it in music that can manipulate your emotions - make you dance - make you cry - make you happy - make you sad . No one knows.
What music means however is much easier to explain or understand. Music means whatever you want it too, there is no wrong or right answer. Sometimes music means a way to earn a living - turnaround and it becomes the reason for living itself.
In conclusion, no one knows what gives music it’s power and those that claim to know are lying to themselves. No one knows what music IS. But, almost everyone has some type of emotional reaction when they hear music and everyone of them knows what music MEANS...to them.
Music is the Best!!!!
Until Next Time
A QUICK STORY...
Summer of 1969 - Woodstock, U.S. Lands on Moon, Vietnam war escalates. All of these were in the headlines that year, but the main thing I remember, as an 11 year old boy, was my first week away from home at Boy Scout Summer Camp. It was a very special summer. It was the summer they called me Jesus Boy.
Most of us were given nicknames by the older guys - usually not very flattering, names like four-eyes - crybaby - or fat Pat. I had been called Andy Panda ( a popular Saturday morning cartoon character ) at YMCA day camp the year before and I dreaded it happening again, However, this year I was lucky, this year mine was cool - it was Jesus Boy. Why Jesus boy? Simple, that was the summer I walked on water.
We have a snake down here in Florida that is one mean son of a gun. Most snakes will hear you coming and get out of your way. They are more afraid of you that you are of them, most snakes, but not a Water Moccasin (also called a Cottonmouth.) A Water Moccasin will flat out attack you if you enter his territory, and their bite can be deadly. Cottonmouths spend most of their time in the water and they prefer slow moving rivers or lakes. At summer camp we would spend most of our time in the water swimming in a spring fed lake. It was beautiful, the perfect spot, and the Cottonmouths thought so too.
While swimming we would always keep a sharp eye out for snakes, especially deadly, aggressive, Cottonmouths. I’m glad that we did. On the first day of camp we had a free swim after they had given us our swimming tests to see which group we were in
1. Good Swimmer
3. Non Swimmer.
After passing the test and receiving my “Good Swimmer” designation I swam over to where my buddies were close to a dock near the shore, when I heard my name being called so loudly I could hear it even underwater. “ANDY! LOOK OUT! A WATER MOCCASIN IS HEADED RIGHT FOR YOU!” I looked up and there it was a 5ft long angry Cottonmouth headed right for me with his jaws wide open. Seeing the white inside of his mouth was all I needed. I jumped up turned around towards shore and ran to safety on top of the crystal clear water, at least that’s how we all remember it. They said I walked (ran) on water. They started calling me Jesus Boy. I do not want to offend anyone, but that was fine with me. Jesus Boy was a great nickname to be given at your first summer camp. It was a great nick name, much better than four-eyes or Andy Panda.
Until next time,
just say yes!
meet Andy Ward King, a professional musician and artist until a diagnosis of parkinons dsease at age 49 forced him into an early retirement., he now uses his music, his art along with the whimsical world he has created in this blog as therapy to ( as he puts it ) outsmart his brain and make the daily battles with parkinson’s a little bit easier, to give him that all important reason to get up on the morning, to make his life worth living. Andy has learned how to say NO to gving up \ NO to depression and apathy \ NO to following willingly the road of decline that stretches before him. he learned that to say no to all of these things all one has to do is say yes. Andy has learned to just say YES to life/\\