The Windmills of My Mind

I feel that I am surrounded. Surrounded by silence where even my voice is not heard.

I have never excelled at verbal skills, whether this be the reason for my being an introvert or the result of being one. And the more my verbal skills deteriorated, so did my social skills, until they became almost totally non-existent.

But there has always been my writing. There can be found my love for words and the key to opening up the hidden secrets of my mind. My writing has enabled me to live in a world which is bearable and allow me to express myself, for better or for worse.

But things have changed. A few years back, I started my second book - When Winter Wind Wears Desert Boots - on a low flame but it soon became all-consuming. Something was wrong, terribly wrong. My body and mind both told me this, but not in unison. They had gone renegade on me and this lack of coordination between the two would become my greatest enemy.

I became a man with a mission. I was now writing a confession. Not a confession of things past, or things that still hadn't happened, but rather a confession of what it was to be human. And to finish it, I only had until the end of time.

It was with a sense of release, then, that I finished the book. It was out there now and no longer haunted me from the inside. I know that many who read it, especially those who know me, found it difficult to read. For they couldn't detach their knowledge of me from the main character in the book and it didn't make any difference to them that the events had never really happened. One close friend who read the first draft of the book told me to never have it published. "It will be your ruin," he said. Another reader - an English teacher - said that the whole book was just smut.

Do I regret the graphic portrayal of desire and search for intimacy? No, I don't. The book was not meant to make you feel comfortable.

For better and for worse, I am leaving this part of me behind. Call it a legacy, if you must.

It was not long after the book was published that I was diagnosed with Parkinson's. It was as if I had been working in the dark and somebody had suddenly turned on the light. The good news was that they knew what was wrong with me. The bad news was that it was only going to get worse with no chance of a cure. One of the many things that I was warned about was increasing speech abnormalities and I felt myself going full circle.

A year has passed since I wrote my last blog entry. I must do better. For if I lose my ability to write, then I have lost all. Right now I am working on my third book - a work of dystopian fiction which mirrors the type of world we live in today. And no, you will find it difficult to find a character who strongly resembles me. How close am I to finishing? Let's say that I am rounding third base and am on my way home.

It is a journey. You are welcome to travel it with me. Maybe at times, I will cause you to smile or even shed a tear. I will be happy to have you as a travelling companion.

And one day, in the distant future, a grandchild of mine may pick up my second book and try to attach the written voice to a vague memory of an ageing man with kind eyes but a stern expression.

Writing ourselves into oblivion

"I don't want to get up. I can't go on like this," my character said, lying in the bed I had written for him. "How do you get up in the morning?" he asked me.
"I pretend that I am you."
"How does that help?"
"For a moment nothing appears real."

Ah, the luxury of being a writer. Writing yourself into a little oasis in an otherwise turbulent world. Or is it the opposite. Is it the turbulence you seek? Somewhere to direct the pain which would otherwise consume you. To help convince you to get up at least one more day.

"And when you know what is real, how do you go on then?" " he asked,
"I have responsibilities."
"Family?"
"Family, yes. Do you want me to write you a family?" I asked.
"Will they be less dysfunctional than your family?"
"My family is not dysfunctional."
"Really?"
"You have to get out more," I said.

There is pain in writing. Most people don't know that. There is even greater pain in not being able to write: a verbal constipation where words remain locked inside, wanting to get out.

Writing, for me, is directly linked to survival. It wasn't that way once, but it is now. A very good friend of mine told me, "It is the DOING of it that matters." And she is right. I am first and foremost writing for myself. Facing my demons face to face. Listening carefully to hear if I still have a voice. But I also would very much like to be read.

And now I will let you in on a little secret. Many of us make New Year Resolutions but rarely expect to carry them through. But I have made a New Year Resolution for 2017 which I have every intention of carrying through. And that is writing a new blog entry every two weeks. Since beginning this blog in 2011, it has never gone this long without a new entry. There are many reasons for not writing. And some may appear quite valid, but none are justified.

When I was diagnosed with Parkinson's, the pivotal moment was whether I would decide to fight it or not. At first, I was stunned. But it only took a short time to make a decision. I wouldn't go out easily. I was left with body and mind and each had declared war on the other. It was for me to keep it all together.

First I began with the body. I went to the gym for two to three weekly workouts. I joined a weekly Pilates class. We could clearly see what was getting better and what was getting worse, and adjust accordingly. But the mind is much more complex. When the body stumbles, you just begin to be a little more careful and put more work into your physical balance. When the mind stumbles, you aren't quite sure what to do, or where it may lead.

The key, I have found, is in finding your rhythm. The more you physically exercise, the better you fall into this rhythm. The more you write, the better the words naturally flow through you. My New Year Resolution is meant to keep me writing, to keep to a rhythm which will keep me moving forward.

And then there is my third book, a very different type of rhythm. It demands all of me at times and takes me to places that I didn't even know existed: some dark and others very bright.

And now that my new characters have begun waking up, I find them beginning to speak to me, and not just through the pages of the book. They appear to have confused what is real with what is unreal and their place in it. I would try to show them their correct place, but that might simply lead to an all out revolt, leaving me with no voice at all. So, the only divisions I can form are by answering back.

The one thing I haven't been able to escape, though, is their critique. I have found my characters to be my harshest critics.

Here's looking at you, kid.

In my early years

I like the early summer mornings, stepping out of the shower to feel the cool breeze on my naked skin. Slowly letting my body air dry. This is my hour, not to be shared with anyone else as I move through the house, still dripping wet.

A few days ago, while nearing the end of this intimate moment of privacy, I stepped out onto the open balcony to hang up my wet towel. And, as is often their habit, a small herd of Ibex had collected on the lawn below, munching contentedly on the grass offering. I stood there quietly for a moment watching them, when suddenly an ibex, one of the younger ones, looked up and saw me standing there, totally naked. He froze in utter fright. Others sensed his fear and looked up, also. It only took a few seconds for the stampede to begin, the ibex making a hasty retreat, back to the wadi from whence they came. Should I have taken offence at this comment on my natural state of being? No, I have learned to roll with the punches and look on the bright side. I may have stumbled across a solution to thwarting their marauding ways: the human scarecrow.

These are the same ibex that allow me to walk slowly and steadily through their ranks on my way to work. Seeing me approach, they will pause their munching for a moment, and then, registering no great danger,  return to their early morning breakfast while keeping track of me through a corner of their eye. How do we explain the former chaos, then? Why should my not wearing clothes make such a difference? Could it be that they do not recognize me in my nakedness? Doesn't that conflict with our instinct? Shouldn't I be most recognizable when I have no masks to hide behind?

As for the neighbours, I haven't received any complaints... so far. Most people are still not up by the time I complete my naked ritual. Although one morning, I thought I caught a few flashes going off from the neighbour's window opposite. Someone taking pictures? Collecting nude pictures of me, perhaps, that could be used against me in a future neighbourhood dispute? I doubt if they were doing this for their own artistic pleasure.

What is it about our bodies, then? Why do some bodies attract and others repel? Why do some look better covered up in clothing and makeup while others look best in their natural glory? Are we genetically programmed to find certain bodily structures more pleasant to the eye? Is this a part of our cognitive structure? And why do we describe one person as merely attractive, while we describe another as stunning? I must admit that I enjoy watching attractive women. One of my guilty pleasures. Come on... aren't we all like that? "You can look, but no touch," Molly told Andrew as he appeared excited by the Israeli female form - quite unlike what he was used to in Oregon. If we aren't flustered at times by a beautiful human figure, then it may be time for someone to check our pulse.

But it isn't all about the curves, all in the right places, is it. As a seasoned armchair woman watcher, I maintain that there is much more to it than that. The eyes have it.
"Oh no," you say, "you aren't going to tell us next that the eyes are the window to the soul. When all you are really interested in is looking at her butt."
Well, call me abnormal. I have been called abnormal about so many other things. But while I may find a woman attractive upon first look, my interest quickly fades away if an attractive figure is all there is. And forgive me for harping on this, but it is in the eyes. If the eyes are vacant, she simply becomes another faceless figure in the crowd.

*This is the time to remind you that I am married and this is merely an armchair sport. Especially since my wife and inlaws sometimes read my blogs, as well as my children, sister and mother...
"You've been dodging the silver bullet for some time," my good friend says to me. "It may have just caught up to you."
I shift uncomfortably in my chair. "They will understand," I say, but this time with a little less conviction.

But let's forget the attractive human body and go back to talking about mine. I do think that after that rather quick response of the Ibex to my naked body, I do deserve a second opinion: this time human. But how do I go about that without appearing to be a pervert? I don't want to make the morning headline - "Naked man shot by police as he reached for.." what exactly?

If we look at my 19-year-old figure above, I once had a body worth keeping. But we can't, can we. Keep it, I mean. Nobody can. Not even those celebrity stars with their botox filled frozen faces. As if someone would really want to kiss that. Much scarier than my naked body, in my humble opinion. But then, I am subjective, aren't I.

In my winter years

The irony about it all is that I probably look better now than I have in the last ten years. I have lost a lot of weight, although I consciously haven't done anything to explain that change. My posture is much better than it has ever been and I am walking much more naturally. I guess I should thank Parkinson's for this. It threw down the glove and I am trying now to gain early ground.

And I have two secret weapons to help me in this struggle:  a badass Pilates instructor and a badass neurologist.  They leave no room for self-pity. The Pilates instructor reminds me of an unwavering drill sergeant. Nothing gets past her. "Body straight, shoulders back! Do you think I don't see you slouching!" My Russian neurologist reminds me of the Russian woman officer at passport control at the Moscow airport where, at one point, I thought she was about to send me to a Russian jail. She didn't understand why I had only a visa for Kazakhstan when I was going to Kyrgyzstan, albeit through Kazakstan. And of course, she didn't speak any English.

You see, that is exactly what I need. Not someone to let me cut corners and try to warmly encourage me. No, they have to be ruthless, within reason. So maybe the ibex had it right, all along.

The gift that keeps on taking

They say, "Don't look a gift horse in the mouth." But when Michael J. Fox deemed Parkinson's disease to be a gift, many people - especially those suffering from the disease - took offense at his choice of words. Nonetheless, Michael continued to describe Parkinson's as a gift, but with the following clarification:

“Because Parkinson’s demanded of me that I be a better man, a better husband, father, and citizen, I often refer to it as a gift. With a nod to those who find this hard to believe, especially my fellow patients who are facing great difficulties, I add this qualifier — it’s the gift that keeps on taking...but it is a gift.”
~ Michael J. Fox

A gift? Really? Can I return it then? Where's the exchange slip?
But there is no exchange slip in the box. It even came without wrapping. No, it appears that it is mine to keep. But what do I do with it now?

Michael certainly wouldn't have called it a gift the day he was diagnosed with what is usually known as an old man's disease. He was at the tender age of 29 and at the height of his acting career. He had wed Tracy Pollan, the love of his life, a few years earlier and they had already started a family. One might say that he was living a charmed life at the time. That is, if it weren't for his excessive drinking and workaholic habits that kept him away from his family and fed on his constant worry that it all would somehow dry up if he didn't keep pushing himself.

And then the sky fell in and the next day was the first day of his life.

Michael's immediate reaction to the diagnosis was to drink even more and take on even more projects to bury himself in work. At that point, it appeared that he had entered the early stage of denial - which lasted for the next nine years as he tried his best to hide this disease from the general public - even from his co-workers on the set of the hit TV series: Spin City, where he was filmed from every angle.

What changed, then? What brought him out of the closet?

"Humility is always a good thing. It's always a good thing to be humbled by circumstances so you can then come from a sincere place to try to deal with them."
~ Michael J. Fox

Michael's coming out had a great effect on the Parkinson community. Parkinson's was a disease that was generally pushed into the background. There was no cure for it. The most you could do was to try and slow it down. It was a disease that many felt ashamed of, because it was so noticeable and socially ugly. And here was Michael, whose warm and expressive boyish features had once won us over in Family Ties and Back to the Future, now exposing the haggard features of his Parkinson to the world - no longer feeling the need to hide his symptoms.

"Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it... I often say now I don't have any choice whether or not I have Parkinson's, but surrounding that non-choice is a million other choices that I can make."
~ Michael J. Fox

Michael was surprised by the strong positive reaction of the Parkinson community to his news. It was then that he realized that it was within his grasp to do much more. He set up the Michael J. Fox Foundation to provide significant funding for promising Parkinson research in the hope that it would lead to a cure. And he set out into the world, speaking at fund raisers and agreeing to give interviews to the media, so that Parkinson's might take on a new face in the public eye. He even continued his acting career, appearing in guest spots in many different TV series. All this, despite his being told at the time of his diagnosis that he might still have a good ten years of work ahead of him. And here he was, ten years later, about to set out on a crusade to find a cure for Parkinson. His work had just begun.

What can we learn from all this? A good friend of mine once said: "It's not the disease which is at the heart of the matter, but rather how we react to the challenge." It is what it is, and we must decide what we will do with it.

We never know how we will react to a situation until we are there. My father was diagnosed with cancer at the age of seventy-six, I was the first one to visit him in the hospital after he had received the diagnosis. "Well, I have had a good life," he told me. That moment has stayed with me ever since.

I am a recluse. I admit that. No matter how many people surround me at times. I am invisible to most. I know that most of this is my own doing. And when it comes to medical challenges, my immediate reaction is to keep it all to myself. This is a result of my upbringing - or at least a significant part of it. But that is another story. I will tell you about it when we know each other better.

As for now, it may be time to change. If Michael could change in his own way, so can I. For I am fortunate to be loved, and fortunate to be surrounded by such a beautiful family. And as long as I am not a heavy burden on them, there is still reason to pull myself out of bed on a cold winter morning.

Humility. Acceptance. Can we do without denial?
"How can you possibly leave yourself so open and vulnerable?" you ask.
"Have I? But you must realize that this blog is not about me. It is about Michael J. Fox."
"Yeah, right," pipes up a little voice from the back. "It's about you and Parkinson's."
"Okay, since we are in a giving mood, I will give you that," I respond. "It's about Parkinson's."