Old Pasture (Bob's forest), oil on canvas, 24 by 30"
by Sören Dawson
Butterfly Typhoon
by Bob Dawson (June 2010)
I was lying on the floor.
Something happened.
My life changed.
A dance teacher shows me breathing and sounding techniques.
She teaches me ways of living with Parkinson’s that I did not know about.
But they are not specific to Parkinson’s.
They are specific to human life.
I am not saying everybody should follow this path.
As in everything, there are many different schools of thought.
There are other good ways.
Serendipity shines on me, day after day. I just walk down a street and manna falls from heaven.
All the time.
Remember that thing about how a butterfly moving its wings sets off a series of events that result in a typhoon on the other side of the world? That happens all the time.
Weather report: widespread butterfly typhoons. This is not a drill. Seek shelter from the storm. Or in the storm. Choose wisely.
What was that they just said on the radio?
I don’t know, I was picturing butterflies.
You too?
I think we should stop and ask for directions.
Certified Parkie:
Bob Dawson. Parkinson’s. Caucasian male, 60+, married, two adult children, no allergies, no other illness; loss of sense of smell as early as 1970; slightly trembling hands noted by co-workers in 1986; wider range of symptoms in 1999, officially diagnosed PD in 2004; sinemet, mirapex, selegiline. Valid Quebec Medicare card. Participated in several clinical trials. Attracted to dance and music and movement in contrast to the movement disorder that afflicts him. Occupation: partner, shareholder, and Vice President of one of the three largest commercial real estate brokerage firms in Canada. Founding partner of the Montreal and Quebec City offices.
Invasion of the body snatchers
(It’s not just shaky hands. It’s not just shuffling when you walk.)
I was asleep, and I woke up to the sensation that my face was wet. I reached up with my hand, and the side of my face was definitely wet; almost sticky somehow. And I felt the pillow and it was drenched.
I felt the pillow again, and touched my face, beard, hair, cheeks, lips. Wet, slightly sticky. In the dark, only one thing came to mind: blood. For some reason my head and upper chest and the pillow and part of the featherbed were covered in blood.
I crawled up the wall, knocking down paintings, found the light switch, and turned on the lights. It was saliva. Industrial quantities of saliva. WTF?
I couldn’t sleep much anymore. But then it stopped. The usual routine symptoms returned. Maybe the Beast would leave me alone for awhile. It looked like I had shaken it off. My mental force fights it off!!!
Then, another night, I woke up and again it felt like there was something on my face. And on my pillow. And in my hair. In the dark, feeling with my fingers, it was sort of powdery, dry, a bit slippery. I turned on the light.
My skin had fallen off.
Face, all the head, some upper torso – like skin peeling after a massive sunburn. The skin from my ears was on the pillow – still in the shape of ears. My hair looked like it had been hit by a blizzard. Skin continued to fall off, in powder and in sheets, as I stood there, shaking.
I felt sick.
It’s trying to scare you, Bob. It is testing your defences. It wants to drag you into horror. Don’t panic. It is trying to frighten you.
The saliva, the skin -- totally useless attacks from a military point of view. Non-fatal. But it was a ruthless demonstration of power. The Beast could make my body turn against me, any time, in a hundred different ways. The Beast was playing with my fear. The Beast was amusing itself. The Beast wanted to play with me for a few years before killing me. Like it did with David.
Nights and days that aren’t remembered
And pain that’s been forgotten
And other things I choose not to recall
In my darkest secret memory
There are faces that come back to me
Faces that I wish would not come back at all
I did not even think it was funny when I thought I could do the ultimate TV commercial for Head & Shoulders dandruff shampoo. That’s not funny, Bob.
Do you know the meaning of the word “dread”? Are you sure you know the meaning of the word “dread”?
That year we had the really bad cold snap. It was minus 30 to 35C every night for a week; minus 20 in the day; seeringly cold north wind; even with all three Jotuls going full blast with dry hardwood; we could not get the temperature in the house to rise above 14 Celsius.
My mattress is on the floor – not so far to fall – and the floor is hemlock, lumber cut from trees on the land. No carpet; just the wood. Those nights, the floor was icy cold. We did not heat the basement.
I was sleeping, one arm stretched out from under the featherbed and onto the floor. My hand was touching the floor. The cold floor.
And something about the coldness of my hand woke me up. I woke up but I did not move. I could feel it was present in the room. It moved. I knew it was coming. I knew it was there.
It started moving slowly up my fingers, up the inside of my hand, and then it started moving up the inside of my arm.
Don’t panic, Bob.
It moved, moved slowly, feeling its way forward, like the blind creatures that live in caves that are perpetually dark and wet and cold.
Oozing up inside my arm, wet and cold and blind and heartless; I panicked – it was heading toward my heart; it would freeze my heart. I opened my eyes but the room was pitch black.
I made a wrong move, a grave tactical error - I yanked my arm and hand in, under the covers, where it was warmer, and where I could curl into a ball. Amateur mistake, decision taken in fear. Wrong move, Bob. Stupid move.
Big mistake. Trojan horse. The enemy was now within the gates. It spread in a matter of minutes throughout my entire body; cold, greenish-grey, like ground up slugs and snails.
And it came up through my neck and into my head and it began disconnecting circuits in my brain; like turning off light switches one by one. And it flicked the switches and watched for my reaction.
It grabbed control of my legs. It made my hands shake wildly. It disconnected the muscles of my face. It wanted my arms.
It flung my arms from side to side, smashing them on the floor as it made me roll. I crawled to a wall and clawed my way up, scratching an oil painting with my fingernails, feeling along the wall, until I found the light switch and I turned the light on. I struggled to get the damn pill container open and swallowed all three drugs with no water. The Beast threw me to the floor again, scattering pills in all directions. It rolled me over again, then I grabbed onto a leg of my desk, and fought back the next attempt to roll me. I curled up in a ball, shaking, swept by convulsions, and just hung on, hung on, until the drugs started to kick in.
Hang on, Bob, hang on, ... there, there, that’s the Mirapex kicking in… yes, there it comes…
The Beast oozed out of me and moved in a stream under the door, leaving the room. I could feel its cold presence sliding away. I lay there shivering, my teeth chattering. Then I got a flashlight and coat and went outside. It was 3 a.m., pitch dark, and minus 35 plus high wind chill. Ice formed in my beard and around my eyes. I vomited violently in the snow.
I tried to warn everybody, but I could not get across.
There is a predator. It knows our bodies. It knows our brains. It knows we are weak. It has great power. It is studying our defences. It is getting ready. It has a plan.
Inside me it builds a prison
surrounding me alone
as real as any dungeon
with its walls of stone
Some people were afraid – not of the Beast, but of me. They turned it against me, as if it was something wrong with me. They would expect you to report a car accident or an outbreak of the swine flu, but not the most important information in thousands of years: that we are being invaded, and that our chances of survival as a species are minimal. Some were sceptical - they knew that Parkinson’s was just old people getting shaky hands. Some saw it as a business opportunity, calling my clients to say I was mentally ill and they should transfer their account. I called a few of those slimy creatures and said, “You had better hope that this never happens to you.”
But I can’t complain. Because an angel who is always by my side rocked me in her arms, and others tried to understand what it was like, and great kindness was poured over my burning heart in hell, and a teacher came to guide me.
And others took a scientific and medical approach.
The Mysterious Anuket, for example (“the only thing we know for sure about Anuket is that her name is not Anuket”), studies a lot of Parkinson’s science - not reading the abstracts, which are advertising more than science - she goes back to the original research and checks and interprets the data - The Mysterious Anuket has a very simple explanation that does not require me to be insane nor does it require the presence of an intelligent alien predator. Anuket said, very simply, that the invasion of the body snatchers does not come uniquely from Parkinson’s Disease. It also comes, she said, from attempts to drown Parkinson’s Disease in a dangerous chemical soup.
The Mysterious Anuket verified the drugs I was taking, and she e-mailed me her analysis of the situation:
Bob, You are taking three powerful brain-altering drugs three times a day, and you have been doing this every day for years, so there is a cumulative effect. Here is what the three drugs you are taking can do to you:
Selegiline – side effects: nausea, vomiting, convulsions, pain, fainting, hallucinations; severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); abnormal thinking; chest pain; confusion; fever; memory loss; anxiety, depression, hostility, panic attacks, sleeplessness; suicidal thoughts or actions; swelling of the arms or legs; tremor.
Mirapex – side effects - Abnormal dreams, chest pain, confusion, difficulty breathing, difficulty walking, dizziness, hallucinations, insomnia, involuntary movements, lack of appetite, memory loss, nausea, vision abnormalities.
Sinemet – side effects:
Your sweat, urine, or saliva may become dark in color, such as red, brown, or black.
Those are the side effects of pills to fight the disease. That is not the disease itself. Some of the side effects of the pills - increased tremors, confusion, etc… are the same as the disease itself. As a patient, I never came close to figuring out what parts of the illness were the illness and what parts of the illness were the things I was swallowing to fight the illness; all 3 drugs may cause hallucinations; sinemet causes uncontrolled shaking, which is what the disease also causes. Mirapex can cause “difficulty walking”. Say what? Isn’t Parkinson’s the cause of the difficulty in walking? Why does the treatment do the same thing as what we are being treated for? Is there some concept here that I have failed to understand? And Selegilene causes panic attacks? All three drugs, plus the disease, give you more than enough reasons to panic. Between the illness and the counter-illness, I never could tell where one began and the other let off.
And none of it had anything to do with me. My role was to swallow the pills.
Although there is an upside. Sinemet, the ultimate designer drug, can change your colour scheme with black or red or brown saliva, sweat and urine. I gotta tell ‘ya, people really don’t expect that. People get out of your way real fast. When the cops stop you for speeding, and they see you drooling black saliva and wiping the red sweat off your forehead, they don’t take the time to write you a ticket. As they rush to get away from you, shout at them “Don’t drink the water – it’s in the water.”
I am not suggesting that anyone stop taking the pills. Cut down if possible, carefully, with professional guidance. NEVER go cold turkey on these drugs, especially sinemet or any form of levodopa. Sudden halt can cause withdrawal worse than crack cocaine; sudden halt can cause permanent brain damage.
Why the pills?
It’s one of those situations where you embrace something really bad because the alternative appears to be dread-full-y worse.
Sweet Sister Selegiline, put your gentle hand on my head.
Magical Mirapex, take me gambling in Vegas instead.
Sinful Sinemet, save me from this lethal dread.
Post-script:
(Marty, you are late to the party. You say it was a mistake to take more of the drugs when in crisis because the drugs caused this crisis, therefore taking more of the drugs at that point was the wrong move. Hey Marty, I can't tell. I feel bad, I take a pill, okay? Then I feel better. Then I feel worse. In this case, you say I over-dosed and should have taken less; I am saying taking more of the drugs got me off the floor. You pays your money and you takes your choice.)
Eugene Han, a butterfly in Korea, on the other side of the world, creates a perfect storm of happiness for me. This kind of thing happens all the time. Most human progress starts this way.
Jinny Han
The butterfly in this case was Jinny (Eugene) Han, surfing the web in Korea.
She came across my website. She showed it to her boss. Who happens to be a renowned documentary producer, Hyun Kim, at EBS, Korean’s national educational TV and internet network. And so began a much-needed butterfly typhoon. Jinny helped change my life by searching for something on the internet and finding me instead - serendipity in loyal service to butterfly revolutions. And of great importance – Jinny Han is a young writer / researcher; others in positions of power might have ignored her butterfly movements, but – and this is essential for butterfly typhoons - the first person she passed it on to – Hyun Kim – decided to go with it.
And they flew from the other side of the planet just to follow me around for a few days. That is serendipity on steroids. That is my legendary good luck once again visible in action.
And Hyun Kim came to Montreal and brought with him “The Eye” – renowned cameraman and producer Eun-Sang Park, - - along with Heeseung Ko, artist and documentary producer who lives in Montreal.
They wanted to know about the connection between music, dance and Parkinson’s. And how dance has affected people’s lives.
I knew then they really would have to talk to Margie Gillis.
The Koreans knew about Margie Gillis being a famous dancer, and they had translated into Korean some of the text from my website, such as:
"My approach is based on listening to the connection between thought, emotion, spirit and body. This is the natural kinetic process whereby our inner landscape translates into electrical impulses that transmit to the muscles the message as to how and with what quality to move. I explore the physical manifestation of this pure experience of being; the neuromuscular interrelationship." - Margie Gillis
And things I had written: “The dancer knows neurology, the dancer knows how the body moves.”
“The dancer knows how to go deep inside, to inner feelings and interpretations of the world, formulating a response to the world, and then the brain, having decided a plan of action, sends out electric and chemical signals through an immensely complex nerve system, to the muscles, telling the muscles how and where and when to move, in what sequence, and with what quality.”
“Dancing is one of the most complex activities that the brain can instruct the muscles to do. Dancers know about movement. Parkies are attracted to dance and to dancers in great numbers. The dancers are extremists of body movement, and they push the human body to its limits. They know things about movement that you cannot learn from a book. They are perfectionists in mind-body co-ordination, the lack of which causes such grief for those with movement disorders.”
It never occurred to me to explain to the dancers and to the Korean film-makers why they were meeting. Margie Gillis had nothing to do with Parkinson’s Disease, and I had never met her before, and the Koreans had never met any of us. The Koreans asked me later what the connection was. And I was saying, “But, but, but it’s Margie Gillis! She does not need to be connected to anything.”
Beauty does not owe me anything.
Beauty is not responsible to cure my disease. The only duty of Beauty is to be beautiful. And it is not a zero-sum game. Whenever I borrow Beauty, I always return it, and try to contribute in some way, even if only to adjust the lighting. The supply of Beauty is never diminished by excessive demand. The supply of Beauty is at least as infinite as the universe. Some say we are near Peak Beauty and a decline inevitably follows. O ye of little faith. Though mountains danced before them, they said that magic was dead.
The interview was disjointed because I had failed to inform any of the participants about the reason they had been called together from around the world. Plus, I was too star-struck by seeing Margie Gillis to say much; I have this ability to become quasi-catatonic when the real world starts asking questions; and with Margie Gillis I have a tendency to swoon.
Don’t move my mountain; teach me how to climb
Geologists study Mt. Everest by looking at satellite photos and examining rock samples. Dancers climb the mountain. They go to the outer limits of human experience, and they do it because it is there to be done; the mountain is there to be climbed.
I have not felt this good in years. No double-blind clinical study with control group taking placebos. Anecdotal, they will say; it is not evidence-based medicine.
Gentlemen of the jury, consider that:
(1) I have not felt this good in years.
(2) Ursula, who has endured me 24/7 since 1968; pronounces that she has not seen me feeling this good in years
(3) I have not felt this good in years.
I rest my case.
If it turns out that I am a minority of one, that’s okay with me
I have lots and lots of experience in being a minority of one.
But I know an ocean when I see one. I worked freighters long ago, deck hand for the Hamburg-America line, mostly across the Atlantic. Sometimes we did not see land for three weeks. It was not a question of “Is it or is it not an ocean?” It was most definitely an ocean. I would not even bother trying to prove that. If someone else cannot see that it is an ocean, I don’t want to offend them by telling them to get their heads checked. But I cannot live by the advice of anyone who tells me they do not see the ocean, as their ship sails majestically across the ocean.
My problem is Parkinson’s; some of the cynics biting at my heels have another condition for which we have yet to find a cure: willful blindness.
To Ursula:
I'm just thankful for the journey
And that we survived the battles And that my reward for victory is you
Every day is better than before
I'm like a soldier getting over the war
Jinny Han’s butterfly typhoon carried me over all obstacles, and there I was, going to learn something – not sure what – from a famous teacher who had TAUGHT MARGIE GILLIS. Oh God. How am I going to handle this? I didn’t expect things to go this far at all. You know, if Albert Einstein volunteered to teach me something, I would not say, “Like what?”
I thought I would be part of some sort of dance class or meditation or exercise club, and there would be 50 people there, which would be good because I could go hide at the back where I wouldn’t be seen and I would be close to the exit. I worried about how I would behave; like would I slip quickly from “on” to “off”; what would the people think? Usually I can see it coming a long way off and pretend to be summoned away by a cell phone call and I quickly go home or if it comes on too fast I curl up in my car in the parking lot. But sometimes – not often – I fall off “on” and fall into “off” at the speed that things normally fall; such as if you drop a brick from an airplane. It goes one way. And it goes fast. And what if I am not able to do whatever it is they are doing? What if we have to jump around and I can’t jump around? And what if I say strange things? What if they kick me out - I would be upset. What if I keep fainting every time Margie Gillis walks by? Should I tell them all I have Parkinson’s? I’ve had people stay away from me because they are afraid it is contagious. It’s not. I don’t think.
In olden times, people who started to shake violently and fall down and speak in tongues were understood to be possessed. By demons or whatever else was in the popular imagination at the time. The general policy was to kill them or cure them – the cure requiring that they drive out the evil spirits. They were right. Well, I don’t personally approve of the killing part, but drive out the Beast, drive out the evil creature… yeah, that would be good. But this line of thought was not helping me, because maybe the 50 people would try to drive out my demons and maybe the demons would get really pissed off and I would be the one to pay for that.
And it pains me to see people helping me and they are disappointed when, despite everybody’s best efforts, I just get worse and worse. That’s what incurable degenerative diseases are designed to do. And then I am disappointed in myself for disappointing them and they are disappointed in themselves and maybe disappointed in me for disappointing them, and even Oprah rolls her eyes.
“It’s physical.” Physical? All my great mental theories do not apply? I started to realize I had joined the Marines. These people are serious. This is not theoretical. You see, you can’t fake it. You can’t pretend it is not there if it is or it is there if it is not. You can’t talk your way into it or out of it. You go and do it and see if it works.
It works. And then you are done-for: you cannot deny it. Whether or not I can physically do certain things is not a matter for conjecture, speculation or intellectual theories. If it was just a string of words, an idea, a political stance, or a fantasy world, I could use other strings of words to debate it, denounce it, and then ignore it. But when it is physical and it changes the way my body moves through the world, which then changes how I think and feel and behave, which in turn gives me methods to manage my handicap, it becomes impossible to deny.
The Pacific Ocean is not a theory. The Rocky Mountains are not special effects created by Hollywood. If you cross the ocean and climb the mountain, and then deny there is an ocean and deny there is a mountain, well then people have a right to laugh at you.
Did I ever tell you that I have to wear a hard hat because of all the manna falling from heaven?
…and it shall come to pass afterward….
Spirit shall pour out on all humanity
Your sons and daughters shall prophesy
And your young people see visions
I was functionally deaf, dumb and emotionally mute as I entered the study. I felt like I had entered into another world. I thought these were Oracles of Delphi. I felt like I was walking on sacred ground. I was shy and inarticulate.
After 15 minutes in that very first session, I started to feel better.
At the end of an hour I was feeling muscles moving in my legs; places where I either felt pain, or felt numbness, for years. Now, instead of feeling pain, I felt my legs in pain. And no such thing as feeling numb. How big is that? That is enormous. After 2 hours I could locate the pain in specific parts of my legs. My legs are part of me; not part of the enemy.
After 15 minutes, my legs felt like they were full of cement. After an hour and half they felt like they were full of electricity. After 2 hours I jumped up full of energy and quiet strength. I had not felt that good in years.
Physical and spiritual exercise don't fix Parkinson’s. It helps you find what is going on inside yourself, at a level below intellect, below concepts, below words… and a surprise: even below emotions. Pre-verbal sensations.
I was so quickly freed from my personal civil war, I could express little more than amazement. I still don’t have the vocabulary or the shared experience to talk about it. I have difficulty describing it. But the Beast had been fighting me fang, tooth and nail, for control of my body. The no-go zones and free-fire zones were well-known; there were internal networks of my enemies - my hands, legs and face, in particular, were notorious traitors. My muscles would get contradictory instructions from different power centers with different opinions about what my muscles should be doing. It was tearing me apart. I was never whole; I was always about to fall apart. On one side of the war, there was Bob when he was “on”, on the other side of the war, there was Parkinson’s Disease itself, plus the evil alien; and somewhere in there, there was also Bob when he was “off” – the cripple who can’t even tie his shoe-laces. What a neighbourhood. And the other big war machine in this civil war inside my body, was, of course, the Holy Trinity of the Parkinson’s Industry, my personal share of the three billion dollars a year spent on levodopa and its agonists, such as sinemet, mirapex and selegiline. With “side effects” such as being thrown to the floor with violent and painful convulsions… I would not call that a side effect, I think that is an EFFECT.
And for weeks that was the main thing I kept feeling; and it was not some idea or some emotion: it was a physical fact. My body was in one piece, and it was ready to act and react as one, and that one was me, and I could even get some recognition from the parts of my body that Parkinson’s liked to throw around.
DON’T PANIC
Do you know the meaning of the word “dread”? Are you sure you know the meaning of the word “dread”?
I am not talking about what the doctors refer to as “Parkinson’s Anxiety”. I don’t know what that is. This is not anxiety. This is dread.
Three days later, I was asleep. It was warm; I was lightly covered with a sheet; with one hand out on the floor.
I have great instincts in the dark. I’m the guy who goes walking deep in the forest at night with a flashlight. And I turn off the light and just listen. Critters move around in the dark; I am surrounded by forest, that I can feel but not see. Why do I do this? I don’t know; but I do enjoy being totally in the dark in the forest because all sorts of instincts suddenly become very alert. I feel fully alive. I feel pre-verbal, pre-civilization. I feel wild and strong and free. And sometimes, in the dark, I hear footsteps. Coyote? Bear? Nothing in the forest scares me.
I was asleep. My night instincts woke me up. Something was moving in the room. I did not move. It slowly came toward me and I imagined I could hear it breathing, very lightly.
Something touched my hand. It was warm this time (WHY? NEW TACTICS?) and it was wet, and it was curiously rough. It moved up on my hand strongly, and then down lightly, and then up again. Over a small spot on the skin on the back of my hand. Making a hole to get into my arm?
I moved my hand as imperceptibly, as slowly as I could, and I felt something I could not identify; it was… I don’t know; sort of furry… I now keep a flashlight in bed, so I slowly, slowly moved my other hand and found the flashlight. I turned on the flashlight. There it was.
A beast, but without the capital “B”.
The cat was licking my hand.
Do you know the meaning of the word “relief”?
Are you sure you know the meaning of the word “relief”.
I rolled onto my back and made slow, quasi-dancing movements with my hands. Then I started to fall, and I fell fast for what seemed to be hundreds of feet, and I felt an exhilaration that had me breathing deeply and smiling from ear to ear. Then the falling stopped but it felt like my back sank three inches into the ground, so that I was fully supported, equally throughout my body, because the earth had changed its contours so that my body fit the earth perfectly, and it fit me. I felt completely at home.
I felt a strength, and a peacefulness, and above all, a wave of gratitude.
Thank you; all of you. You know who you are, now and over the years. I am forwarding to you a wave of gratitude that just came by my place. It is the anti-tsunami; do not flee to high ground;
Go out on the beach and let it carry you away.
It’s a wave of gratitude and thankfulness.
Oh, and I did not panic. Nor should you.
I looked at the clock – it was 3 a.m. Why is it so often 3 a.m.? I went to sleep again and got up at 6. I chopped firewood for an hour – a sugar maple about 7 feet in diameter that I had cut down and sliced up some time ago. It was then 7 a.m., so I did the logical thing: I went in the barn and cranked up the speakers: Darcey’s latest selection of required-listening Blues rattled the old windows, and I danced and horsed around for an hour; at 8 a.m. it occurred to me to have breakfast; I got ready for Montreal and arrived at my business meeting at 11 a.m.; with Etta James singing in my earphones I sashayed into the boardroom and made my presentation: about 10% of it answered their inane questions; the other 90% was information they had not asked for, or not even thought of; information I had to show them how to use. Information they needed to make a decision. Their own decision, not mine.
Then I drove home and put on my peaked cap and knocked at the door of my house and told Ursula that I am the temp. chauffeur and her car is waiting. I escorted her and opened the door to the back seat, passenger’s side, and then I got in the driver’s seat in front and chauffeured milady up Covey Hill, where the skyline of Montreal is visible even though it is 50 km away. Then we went down the scarily steep hill to Route 202 and I headed west, chauffeuring milady to the Rockburn Pub. We each got a pint of Guinness, and the bartender saluted us magnificently by putting on the disc I gave them a year ago: “bob’s bootleg basement blues for baby boomers battling the beast – exclusive sabre tooth tiger edition”.
Ursula lit up the room with her presence, and was at the centre of multiple conversations, and exceptionally frank in some of the repartee. There was active speculation at the bar about what she and I had been up to in the year since we had been there. Had we joined a religious group and taken a vow of perpetual silence, or were we running guns to the rebels in the hills? And what, exactly, had they replaced in Bob?
From someone, they would not say who, came a free round of drinks for everybody in the entire place.
I’m like a soldier getting over the war
(I don’t have to do that any more)
The civil war was over. There was no alien Beast taking over my body. How did I know that? Because I could feel, physically, that my body was in one piece, and my brain and muscles were in communication with each other, instead of spending their limited time and energy trying to outwit Parkinson’s or out-run it or make it play nice.
I still have Parkinson’s. But it does not have me. I just happen to be this body that you see, okay? If my leg gets chopped off, then I’ve lost a leg. But what’s left is still me, or what’s left of me. And what’s left of me - well, that’s what I’ve got left. Some of it still works real good.
The thing that kept throwing itself in front of my attention; absolutely must viewing, was that my body was all in one piece. That may seem pretty boring to you – body all in one piece, that’s the winning result? -- but try to imagine the opposite. What if, for example, your legs were controlled by a separate control center that ripped out the communication wires that your brain needed to give instructions to your legs. Your brain still controls your abdomen but does not control your legs; your legs are controlled by something that hates you. And then the thing that hates you is not satisfied with controlling your legs, so it picks and chooses what other parts of your body it wants to control, and when, and what it will do with them. How you like them apples, wise guy?
Crossing the street, my feet froze to the ground. Cars honking. Stood there talking to my feet. Remember how to walk? How can you forget how to walk?
And I learned to hate the way it would, at random, turn my face into a rigid mask - it disconnected my face muscles, and so I appeared to have no emotions, possibly no intelligence. Which the Beast uses to set off a lot of emotion - knowing that my frozen face would almost crack as the emotions were held in, with the normal means of expressing them taken away.
My legs were full of cement and I cared for nothing and an hour later my legs were full of electricity and I cared passionately about just about everything I could see. I mean, whoa! I left the first session in a state of euphoria; I thought I was gliding down the sidewalk with the soles of my feet about 6 inches off the ground.
I announced:
I HAVE DISCOVERED A NEW PRIMARY COLOUR.
I don’t have a name for it yet. What would you call a new colour? You could not imagine red or blue if they did not exist. And how can we describe the new colour to people who never get a chance to see it? In olden days the King of England was peeved at his explorers who told him about far-away islands where something called pineapples grew, and no one could describe what pineapples taste like. Even explorers who had eaten lots of pineapples could not communicate how it tasted. So he sent a navy ship to the South Pacific to get him some pineapples, and he liked the pineapples so much, they became the most expensive fruit in the world – the dessert of kings. That’s my situation exactly.
POLITICAL TALKING POINTS
I do not consider my opinions about anything to be of consequence to anyone. But whenever someone says “holistic” or “patient-oriented medicine”, political bells seem to ring, and everybody gets categorized. So let me assist you in identifying my socio-political stance:
I am not part of any herbal tea, tree-hugging movement. I don’t drink any kind of tea, and I have four chain saws and I just love cutting down trees. I am a commercial real estate salesman. I believe the world owes me a fast car. I liked Ronald Reagan. I certainly do not take public transportation. I am in favour of plastic bags because the re-usable bags collect bacteria. I do not believe mankind is causing global warming – the sun is doing that. I voted Conservative in the past 4 elections. I am opposed to government deficits. I am not sympathetic towards creatures that chew up my garden. I don’t join groups except accidentally. I always figured Hank Williams is at the center of culture. I have not read any of the books or articles about this kind of training. They are probably all crazy. BUT IT WORKS FOR ME. Don’t ask me how or why. It is physical, and it does a lot for me. I experience it, daily. My relationship with my body has changed overnight. My relationship with the disease has changed overnight.
And my relationships with people and places and events change within hours, or sometimes days or up to two weeks, after changes in my response to the disease. I am anchored, I am whole, I try to see what is true and I try to describe it. I see beauty everywhere. I am no longer fighting, anywhere. I know my ticket is expiring, perhaps soon, perhaps not for a long time, perhaps before yours (Parkie cases are wildly individual – you can croak in a few months or go on for 25 years, and nobody knows why). But no matter what, I have had a really good ride for more than sixty years, and counting. If you ever hear me complain about anything, go ahead and smack me on the side of the head. I have absolutely nothing to complain about. Every time I roll the dice, it comes up sevens. Been like that all my life. I am definitely not in a strong philosophical position to refuse the universe or demand that it be re-designed for me.
Part way through the second session, I just had to lie there for awhile and luxuriate. I said that I have not felt so good in the past ten years. Then, searching my memory, I said I may never have felt this good before. I started throwing out everything that was not beautiful or useful – books, furniture, junk, some people. I felt a solid determination to thoroughly enjoy the whole show.
(to be continued, in my life for sure; maybe in yours too.)
Truth in packaging: Almost everything in this chapter, indeed in the entire website, indeed in everything I have ever written or said, is almost entirely plagarized, copied, imitated. I can’t help it: it is a side effect of Mirapex, like the gambling, boozing, compulsive shopping, binge eating, reckless driving, and speaking in tongues. Culture theft is an undocumented but obvious addiction, like eating up somebody else’s bag of Cheetos and then trying to explain why your hands are all orange.
Most everything written here that catches your attention is copied blatantly from Leonard Cohen; plus a lot of Blues Advice from Darcey Jerrom, plus many lines purloined from Dylan, Isaiah, Johnny Cash, Hank Williams, the Stone Coyotes, Hank Snow, Calvin Russell, Kashtin, and even a blatant rip-off of a Robin Williams joke, plus others too numerous to mention. I would have to put a footnote after every three words. And, besides, the words I have borrowed are the Words of the Prophets, and they can’t expect us to not use their words, when they are the ones who taught us to see, and taught us to use those words to show other people what we see. Prophets don’t get to keep their prophecies under lock and key. It just goes with the job that millions of us learned what they taught us.
I rest my case.
Bob Dawson
Reminder from Darcey (quoting another Prophet):
Butterfly Typhoon
by Bob Dawson (June 2010)
I was lying on the floor.
Something happened.
My life changed.
A dance teacher shows me breathing and sounding techniques.
She teaches me ways of living with Parkinson’s that I did not know about.
But they are not specific to Parkinson’s.
They are specific to human life.
I am not saying everybody should follow this path.
As in everything, there are many different schools of thought.
There are other good ways.
Serendipity shines on me, day after day. I just walk down a street and manna falls from heaven.
All the time.
Remember that thing about how a butterfly moving its wings sets off a series of events that result in a typhoon on the other side of the world? That happens all the time.
Weather report: widespread butterfly typhoons. This is not a drill. Seek shelter from the storm. Or in the storm. Choose wisely.
What was that they just said on the radio?
I don’t know, I was picturing butterflies.
You too?
I think we should stop and ask for directions.
Certified Parkie:
Bob Dawson. Parkinson’s. Caucasian male, 60+, married, two adult children, no allergies, no other illness; loss of sense of smell as early as 1970; slightly trembling hands noted by co-workers in 1986; wider range of symptoms in 1999, officially diagnosed PD in 2004; sinemet, mirapex, selegiline. Valid Quebec Medicare card. Participated in several clinical trials. Attracted to dance and music and movement in contrast to the movement disorder that afflicts him. Occupation: partner, shareholder, and Vice President of one of the three largest commercial real estate brokerage firms in Canada. Founding partner of the Montreal and Quebec City offices.
Invasion of the body snatchers
(It’s not just shaky hands. It’s not just shuffling when you walk.)
I was asleep, and I woke up to the sensation that my face was wet. I reached up with my hand, and the side of my face was definitely wet; almost sticky somehow. And I felt the pillow and it was drenched.
I felt the pillow again, and touched my face, beard, hair, cheeks, lips. Wet, slightly sticky. In the dark, only one thing came to mind: blood. For some reason my head and upper chest and the pillow and part of the featherbed were covered in blood.
I crawled up the wall, knocking down paintings, found the light switch, and turned on the lights. It was saliva. Industrial quantities of saliva. WTF?
I couldn’t sleep much anymore. But then it stopped. The usual routine symptoms returned. Maybe the Beast would leave me alone for awhile. It looked like I had shaken it off. My mental force fights it off!!!
Then, another night, I woke up and again it felt like there was something on my face. And on my pillow. And in my hair. In the dark, feeling with my fingers, it was sort of powdery, dry, a bit slippery. I turned on the light.
My skin had fallen off.
Face, all the head, some upper torso – like skin peeling after a massive sunburn. The skin from my ears was on the pillow – still in the shape of ears. My hair looked like it had been hit by a blizzard. Skin continued to fall off, in powder and in sheets, as I stood there, shaking.
I felt sick.
It’s trying to scare you, Bob. It is testing your defences. It wants to drag you into horror. Don’t panic. It is trying to frighten you.
The saliva, the skin -- totally useless attacks from a military point of view. Non-fatal. But it was a ruthless demonstration of power. The Beast could make my body turn against me, any time, in a hundred different ways. The Beast was playing with my fear. The Beast was amusing itself. The Beast wanted to play with me for a few years before killing me. Like it did with David.
Nights and days that aren’t remembered
And pain that’s been forgotten
And other things I choose not to recall
In my darkest secret memory
There are faces that come back to me
Faces that I wish would not come back at all
I did not even think it was funny when I thought I could do the ultimate TV commercial for Head & Shoulders dandruff shampoo. That’s not funny, Bob.
Do you know the meaning of the word “dread”? Are you sure you know the meaning of the word “dread”?
That year we had the really bad cold snap. It was minus 30 to 35C every night for a week; minus 20 in the day; seeringly cold north wind; even with all three Jotuls going full blast with dry hardwood; we could not get the temperature in the house to rise above 14 Celsius.
My mattress is on the floor – not so far to fall – and the floor is hemlock, lumber cut from trees on the land. No carpet; just the wood. Those nights, the floor was icy cold. We did not heat the basement.
I was sleeping, one arm stretched out from under the featherbed and onto the floor. My hand was touching the floor. The cold floor.
And something about the coldness of my hand woke me up. I woke up but I did not move. I could feel it was present in the room. It moved. I knew it was coming. I knew it was there.
It started moving slowly up my fingers, up the inside of my hand, and then it started moving up the inside of my arm.
Don’t panic, Bob.
It moved, moved slowly, feeling its way forward, like the blind creatures that live in caves that are perpetually dark and wet and cold.
Oozing up inside my arm, wet and cold and blind and heartless; I panicked – it was heading toward my heart; it would freeze my heart. I opened my eyes but the room was pitch black.
I made a wrong move, a grave tactical error - I yanked my arm and hand in, under the covers, where it was warmer, and where I could curl into a ball. Amateur mistake, decision taken in fear. Wrong move, Bob. Stupid move.
Big mistake. Trojan horse. The enemy was now within the gates. It spread in a matter of minutes throughout my entire body; cold, greenish-grey, like ground up slugs and snails.
And it came up through my neck and into my head and it began disconnecting circuits in my brain; like turning off light switches one by one. And it flicked the switches and watched for my reaction.
It grabbed control of my legs. It made my hands shake wildly. It disconnected the muscles of my face. It wanted my arms.
It flung my arms from side to side, smashing them on the floor as it made me roll. I crawled to a wall and clawed my way up, scratching an oil painting with my fingernails, feeling along the wall, until I found the light switch and I turned the light on. I struggled to get the damn pill container open and swallowed all three drugs with no water. The Beast threw me to the floor again, scattering pills in all directions. It rolled me over again, then I grabbed onto a leg of my desk, and fought back the next attempt to roll me. I curled up in a ball, shaking, swept by convulsions, and just hung on, hung on, until the drugs started to kick in.
Hang on, Bob, hang on, ... there, there, that’s the Mirapex kicking in… yes, there it comes…
The Beast oozed out of me and moved in a stream under the door, leaving the room. I could feel its cold presence sliding away. I lay there shivering, my teeth chattering. Then I got a flashlight and coat and went outside. It was 3 a.m., pitch dark, and minus 35 plus high wind chill. Ice formed in my beard and around my eyes. I vomited violently in the snow.
I tried to warn everybody, but I could not get across.
There is a predator. It knows our bodies. It knows our brains. It knows we are weak. It has great power. It is studying our defences. It is getting ready. It has a plan.
Inside me it builds a prison
surrounding me alone
as real as any dungeon
with its walls of stone
Some people were afraid – not of the Beast, but of me. They turned it against me, as if it was something wrong with me. They would expect you to report a car accident or an outbreak of the swine flu, but not the most important information in thousands of years: that we are being invaded, and that our chances of survival as a species are minimal. Some were sceptical - they knew that Parkinson’s was just old people getting shaky hands. Some saw it as a business opportunity, calling my clients to say I was mentally ill and they should transfer their account. I called a few of those slimy creatures and said, “You had better hope that this never happens to you.”
But I can’t complain. Because an angel who is always by my side rocked me in her arms, and others tried to understand what it was like, and great kindness was poured over my burning heart in hell, and a teacher came to guide me.
And others took a scientific and medical approach.
The Mysterious Anuket, for example (“the only thing we know for sure about Anuket is that her name is not Anuket”), studies a lot of Parkinson’s science - not reading the abstracts, which are advertising more than science - she goes back to the original research and checks and interprets the data - The Mysterious Anuket has a very simple explanation that does not require me to be insane nor does it require the presence of an intelligent alien predator. Anuket said, very simply, that the invasion of the body snatchers does not come uniquely from Parkinson’s Disease. It also comes, she said, from attempts to drown Parkinson’s Disease in a dangerous chemical soup.
The Mysterious Anuket verified the drugs I was taking, and she e-mailed me her analysis of the situation:
Bob, You are taking three powerful brain-altering drugs three times a day, and you have been doing this every day for years, so there is a cumulative effect. Here is what the three drugs you are taking can do to you:
Selegiline – side effects: nausea, vomiting, convulsions, pain, fainting, hallucinations; severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); abnormal thinking; chest pain; confusion; fever; memory loss; anxiety, depression, hostility, panic attacks, sleeplessness; suicidal thoughts or actions; swelling of the arms or legs; tremor.
Mirapex – side effects - Abnormal dreams, chest pain, confusion, difficulty breathing, difficulty walking, dizziness, hallucinations, insomnia, involuntary movements, lack of appetite, memory loss, nausea, vision abnormalities.
Sinemet – side effects:
Your sweat, urine, or saliva may become dark in color, such as red, brown, or black.
- Hives; difficulty breathing; swelling of face, lips, tongue, throat.
- restless muscle movements in your eyes, tongue, jaw, or neck;
- worsening of tremors (uncontrolled shaking);
- high fever, stiff muscles, sweating, fast or uneven heartbeats, rapid breathing, feeling like you might pass out;
- seizure (convulsions);
- severe nausea, vomiting;
- uneven heart rate or fluttering in your chest;
- confusion, hallucinations, anxiety, agitation, unusual thoughts or behaviour;
- depressed mood, thoughts of suicide or hurting yourself;
- chest pain, pain spreading to the arm or shoulder.
Those are the side effects of pills to fight the disease. That is not the disease itself. Some of the side effects of the pills - increased tremors, confusion, etc… are the same as the disease itself. As a patient, I never came close to figuring out what parts of the illness were the illness and what parts of the illness were the things I was swallowing to fight the illness; all 3 drugs may cause hallucinations; sinemet causes uncontrolled shaking, which is what the disease also causes. Mirapex can cause “difficulty walking”. Say what? Isn’t Parkinson’s the cause of the difficulty in walking? Why does the treatment do the same thing as what we are being treated for? Is there some concept here that I have failed to understand? And Selegilene causes panic attacks? All three drugs, plus the disease, give you more than enough reasons to panic. Between the illness and the counter-illness, I never could tell where one began and the other let off.
And none of it had anything to do with me. My role was to swallow the pills.
Although there is an upside. Sinemet, the ultimate designer drug, can change your colour scheme with black or red or brown saliva, sweat and urine. I gotta tell ‘ya, people really don’t expect that. People get out of your way real fast. When the cops stop you for speeding, and they see you drooling black saliva and wiping the red sweat off your forehead, they don’t take the time to write you a ticket. As they rush to get away from you, shout at them “Don’t drink the water – it’s in the water.”
I am not suggesting that anyone stop taking the pills. Cut down if possible, carefully, with professional guidance. NEVER go cold turkey on these drugs, especially sinemet or any form of levodopa. Sudden halt can cause withdrawal worse than crack cocaine; sudden halt can cause permanent brain damage.
Why the pills?
It’s one of those situations where you embrace something really bad because the alternative appears to be dread-full-y worse.
Sweet Sister Selegiline, put your gentle hand on my head.
Magical Mirapex, take me gambling in Vegas instead.
Sinful Sinemet, save me from this lethal dread.
Post-script:
(Marty, you are late to the party. You say it was a mistake to take more of the drugs when in crisis because the drugs caused this crisis, therefore taking more of the drugs at that point was the wrong move. Hey Marty, I can't tell. I feel bad, I take a pill, okay? Then I feel better. Then I feel worse. In this case, you say I over-dosed and should have taken less; I am saying taking more of the drugs got me off the floor. You pays your money and you takes your choice.)
Eugene Han, a butterfly in Korea, on the other side of the world, creates a perfect storm of happiness for me. This kind of thing happens all the time. Most human progress starts this way.
Jinny HanThe butterfly in this case was Jinny (Eugene) Han, surfing the web in Korea.
She came across my website. She showed it to her boss. Who happens to be a renowned documentary producer, Hyun Kim, at EBS, Korean’s national educational TV and internet network. And so began a much-needed butterfly typhoon. Jinny helped change my life by searching for something on the internet and finding me instead - serendipity in loyal service to butterfly revolutions. And of great importance – Jinny Han is a young writer / researcher; others in positions of power might have ignored her butterfly movements, but – and this is essential for butterfly typhoons - the first person she passed it on to – Hyun Kim – decided to go with it.
And they flew from the other side of the planet just to follow me around for a few days. That is serendipity on steroids. That is my legendary good luck once again visible in action.
And Hyun Kim came to Montreal and brought with him “The Eye” – renowned cameraman and producer Eun-Sang Park, - - along with Heeseung Ko, artist and documentary producer who lives in Montreal.
They wanted to know about the connection between music, dance and Parkinson’s. And how dance has affected people’s lives.
I knew then they really would have to talk to Margie Gillis.
The Koreans knew about Margie Gillis being a famous dancer, and they had translated into Korean some of the text from my website, such as:
"My approach is based on listening to the connection between thought, emotion, spirit and body. This is the natural kinetic process whereby our inner landscape translates into electrical impulses that transmit to the muscles the message as to how and with what quality to move. I explore the physical manifestation of this pure experience of being; the neuromuscular interrelationship." - Margie Gillis
And things I had written: “The dancer knows neurology, the dancer knows how the body moves.”
“The dancer knows how to go deep inside, to inner feelings and interpretations of the world, formulating a response to the world, and then the brain, having decided a plan of action, sends out electric and chemical signals through an immensely complex nerve system, to the muscles, telling the muscles how and where and when to move, in what sequence, and with what quality.”
“Dancing is one of the most complex activities that the brain can instruct the muscles to do. Dancers know about movement. Parkies are attracted to dance and to dancers in great numbers. The dancers are extremists of body movement, and they push the human body to its limits. They know things about movement that you cannot learn from a book. They are perfectionists in mind-body co-ordination, the lack of which causes such grief for those with movement disorders.”
It never occurred to me to explain to the dancers and to the Korean film-makers why they were meeting. Margie Gillis had nothing to do with Parkinson’s Disease, and I had never met her before, and the Koreans had never met any of us. The Koreans asked me later what the connection was. And I was saying, “But, but, but it’s Margie Gillis! She does not need to be connected to anything.”
Beauty does not owe me anything.
Beauty is not responsible to cure my disease. The only duty of Beauty is to be beautiful. And it is not a zero-sum game. Whenever I borrow Beauty, I always return it, and try to contribute in some way, even if only to adjust the lighting. The supply of Beauty is never diminished by excessive demand. The supply of Beauty is at least as infinite as the universe. Some say we are near Peak Beauty and a decline inevitably follows. O ye of little faith. Though mountains danced before them, they said that magic was dead.
The interview was disjointed because I had failed to inform any of the participants about the reason they had been called together from around the world. Plus, I was too star-struck by seeing Margie Gillis to say much; I have this ability to become quasi-catatonic when the real world starts asking questions; and with Margie Gillis I have a tendency to swoon.
Don’t move my mountain; teach me how to climb
Geologists study Mt. Everest by looking at satellite photos and examining rock samples. Dancers climb the mountain. They go to the outer limits of human experience, and they do it because it is there to be done; the mountain is there to be climbed.
I have not felt this good in years. No double-blind clinical study with control group taking placebos. Anecdotal, they will say; it is not evidence-based medicine.
Gentlemen of the jury, consider that:
(1) I have not felt this good in years.
(2) Ursula, who has endured me 24/7 since 1968; pronounces that she has not seen me feeling this good in years
(3) I have not felt this good in years.
I rest my case.
If it turns out that I am a minority of one, that’s okay with me
I have lots and lots of experience in being a minority of one.
But I know an ocean when I see one. I worked freighters long ago, deck hand for the Hamburg-America line, mostly across the Atlantic. Sometimes we did not see land for three weeks. It was not a question of “Is it or is it not an ocean?” It was most definitely an ocean. I would not even bother trying to prove that. If someone else cannot see that it is an ocean, I don’t want to offend them by telling them to get their heads checked. But I cannot live by the advice of anyone who tells me they do not see the ocean, as their ship sails majestically across the ocean.
My problem is Parkinson’s; some of the cynics biting at my heels have another condition for which we have yet to find a cure: willful blindness.
To Ursula:
I'm just thankful for the journey
And that we survived the battles And that my reward for victory is you
Every day is better than before
I'm like a soldier getting over the war
Jinny Han’s butterfly typhoon carried me over all obstacles, and there I was, going to learn something – not sure what – from a famous teacher who had TAUGHT MARGIE GILLIS. Oh God. How am I going to handle this? I didn’t expect things to go this far at all. You know, if Albert Einstein volunteered to teach me something, I would not say, “Like what?”
I thought I would be part of some sort of dance class or meditation or exercise club, and there would be 50 people there, which would be good because I could go hide at the back where I wouldn’t be seen and I would be close to the exit. I worried about how I would behave; like would I slip quickly from “on” to “off”; what would the people think? Usually I can see it coming a long way off and pretend to be summoned away by a cell phone call and I quickly go home or if it comes on too fast I curl up in my car in the parking lot. But sometimes – not often – I fall off “on” and fall into “off” at the speed that things normally fall; such as if you drop a brick from an airplane. It goes one way. And it goes fast. And what if I am not able to do whatever it is they are doing? What if we have to jump around and I can’t jump around? And what if I say strange things? What if they kick me out - I would be upset. What if I keep fainting every time Margie Gillis walks by? Should I tell them all I have Parkinson’s? I’ve had people stay away from me because they are afraid it is contagious. It’s not. I don’t think.
In olden times, people who started to shake violently and fall down and speak in tongues were understood to be possessed. By demons or whatever else was in the popular imagination at the time. The general policy was to kill them or cure them – the cure requiring that they drive out the evil spirits. They were right. Well, I don’t personally approve of the killing part, but drive out the Beast, drive out the evil creature… yeah, that would be good. But this line of thought was not helping me, because maybe the 50 people would try to drive out my demons and maybe the demons would get really pissed off and I would be the one to pay for that.
And it pains me to see people helping me and they are disappointed when, despite everybody’s best efforts, I just get worse and worse. That’s what incurable degenerative diseases are designed to do. And then I am disappointed in myself for disappointing them and they are disappointed in themselves and maybe disappointed in me for disappointing them, and even Oprah rolls her eyes.
“It’s physical.” Physical? All my great mental theories do not apply? I started to realize I had joined the Marines. These people are serious. This is not theoretical. You see, you can’t fake it. You can’t pretend it is not there if it is or it is there if it is not. You can’t talk your way into it or out of it. You go and do it and see if it works.
It works. And then you are done-for: you cannot deny it. Whether or not I can physically do certain things is not a matter for conjecture, speculation or intellectual theories. If it was just a string of words, an idea, a political stance, or a fantasy world, I could use other strings of words to debate it, denounce it, and then ignore it. But when it is physical and it changes the way my body moves through the world, which then changes how I think and feel and behave, which in turn gives me methods to manage my handicap, it becomes impossible to deny.
The Pacific Ocean is not a theory. The Rocky Mountains are not special effects created by Hollywood. If you cross the ocean and climb the mountain, and then deny there is an ocean and deny there is a mountain, well then people have a right to laugh at you.
Did I ever tell you that I have to wear a hard hat because of all the manna falling from heaven?
…and it shall come to pass afterward….
Spirit shall pour out on all humanity
Your sons and daughters shall prophesy
And your young people see visions
I was functionally deaf, dumb and emotionally mute as I entered the study. I felt like I had entered into another world. I thought these were Oracles of Delphi. I felt like I was walking on sacred ground. I was shy and inarticulate.
After 15 minutes in that very first session, I started to feel better.
At the end of an hour I was feeling muscles moving in my legs; places where I either felt pain, or felt numbness, for years. Now, instead of feeling pain, I felt my legs in pain. And no such thing as feeling numb. How big is that? That is enormous. After 2 hours I could locate the pain in specific parts of my legs. My legs are part of me; not part of the enemy.
After 15 minutes, my legs felt like they were full of cement. After an hour and half they felt like they were full of electricity. After 2 hours I jumped up full of energy and quiet strength. I had not felt that good in years.
Physical and spiritual exercise don't fix Parkinson’s. It helps you find what is going on inside yourself, at a level below intellect, below concepts, below words… and a surprise: even below emotions. Pre-verbal sensations.
I was so quickly freed from my personal civil war, I could express little more than amazement. I still don’t have the vocabulary or the shared experience to talk about it. I have difficulty describing it. But the Beast had been fighting me fang, tooth and nail, for control of my body. The no-go zones and free-fire zones were well-known; there were internal networks of my enemies - my hands, legs and face, in particular, were notorious traitors. My muscles would get contradictory instructions from different power centers with different opinions about what my muscles should be doing. It was tearing me apart. I was never whole; I was always about to fall apart. On one side of the war, there was Bob when he was “on”, on the other side of the war, there was Parkinson’s Disease itself, plus the evil alien; and somewhere in there, there was also Bob when he was “off” – the cripple who can’t even tie his shoe-laces. What a neighbourhood. And the other big war machine in this civil war inside my body, was, of course, the Holy Trinity of the Parkinson’s Industry, my personal share of the three billion dollars a year spent on levodopa and its agonists, such as sinemet, mirapex and selegiline. With “side effects” such as being thrown to the floor with violent and painful convulsions… I would not call that a side effect, I think that is an EFFECT.
And for weeks that was the main thing I kept feeling; and it was not some idea or some emotion: it was a physical fact. My body was in one piece, and it was ready to act and react as one, and that one was me, and I could even get some recognition from the parts of my body that Parkinson’s liked to throw around.
DON’T PANIC
Do you know the meaning of the word “dread”? Are you sure you know the meaning of the word “dread”?
I am not talking about what the doctors refer to as “Parkinson’s Anxiety”. I don’t know what that is. This is not anxiety. This is dread.
Three days later, I was asleep. It was warm; I was lightly covered with a sheet; with one hand out on the floor.
I have great instincts in the dark. I’m the guy who goes walking deep in the forest at night with a flashlight. And I turn off the light and just listen. Critters move around in the dark; I am surrounded by forest, that I can feel but not see. Why do I do this? I don’t know; but I do enjoy being totally in the dark in the forest because all sorts of instincts suddenly become very alert. I feel fully alive. I feel pre-verbal, pre-civilization. I feel wild and strong and free. And sometimes, in the dark, I hear footsteps. Coyote? Bear? Nothing in the forest scares me.
I was asleep. My night instincts woke me up. Something was moving in the room. I did not move. It slowly came toward me and I imagined I could hear it breathing, very lightly.
Something touched my hand. It was warm this time (WHY? NEW TACTICS?) and it was wet, and it was curiously rough. It moved up on my hand strongly, and then down lightly, and then up again. Over a small spot on the skin on the back of my hand. Making a hole to get into my arm?
I moved my hand as imperceptibly, as slowly as I could, and I felt something I could not identify; it was… I don’t know; sort of furry… I now keep a flashlight in bed, so I slowly, slowly moved my other hand and found the flashlight. I turned on the flashlight. There it was.
A beast, but without the capital “B”.
The cat was licking my hand.
Do you know the meaning of the word “relief”?
Are you sure you know the meaning of the word “relief”.
I rolled onto my back and made slow, quasi-dancing movements with my hands. Then I started to fall, and I fell fast for what seemed to be hundreds of feet, and I felt an exhilaration that had me breathing deeply and smiling from ear to ear. Then the falling stopped but it felt like my back sank three inches into the ground, so that I was fully supported, equally throughout my body, because the earth had changed its contours so that my body fit the earth perfectly, and it fit me. I felt completely at home.
I felt a strength, and a peacefulness, and above all, a wave of gratitude.
Thank you; all of you. You know who you are, now and over the years. I am forwarding to you a wave of gratitude that just came by my place. It is the anti-tsunami; do not flee to high ground;
Go out on the beach and let it carry you away.
It’s a wave of gratitude and thankfulness.
Oh, and I did not panic. Nor should you.
I looked at the clock – it was 3 a.m. Why is it so often 3 a.m.? I went to sleep again and got up at 6. I chopped firewood for an hour – a sugar maple about 7 feet in diameter that I had cut down and sliced up some time ago. It was then 7 a.m., so I did the logical thing: I went in the barn and cranked up the speakers: Darcey’s latest selection of required-listening Blues rattled the old windows, and I danced and horsed around for an hour; at 8 a.m. it occurred to me to have breakfast; I got ready for Montreal and arrived at my business meeting at 11 a.m.; with Etta James singing in my earphones I sashayed into the boardroom and made my presentation: about 10% of it answered their inane questions; the other 90% was information they had not asked for, or not even thought of; information I had to show them how to use. Information they needed to make a decision. Their own decision, not mine.
Then I drove home and put on my peaked cap and knocked at the door of my house and told Ursula that I am the temp. chauffeur and her car is waiting. I escorted her and opened the door to the back seat, passenger’s side, and then I got in the driver’s seat in front and chauffeured milady up Covey Hill, where the skyline of Montreal is visible even though it is 50 km away. Then we went down the scarily steep hill to Route 202 and I headed west, chauffeuring milady to the Rockburn Pub. We each got a pint of Guinness, and the bartender saluted us magnificently by putting on the disc I gave them a year ago: “bob’s bootleg basement blues for baby boomers battling the beast – exclusive sabre tooth tiger edition”.
Ursula lit up the room with her presence, and was at the centre of multiple conversations, and exceptionally frank in some of the repartee. There was active speculation at the bar about what she and I had been up to in the year since we had been there. Had we joined a religious group and taken a vow of perpetual silence, or were we running guns to the rebels in the hills? And what, exactly, had they replaced in Bob?
From someone, they would not say who, came a free round of drinks for everybody in the entire place.
I’m like a soldier getting over the war
(I don’t have to do that any more)
The civil war was over. There was no alien Beast taking over my body. How did I know that? Because I could feel, physically, that my body was in one piece, and my brain and muscles were in communication with each other, instead of spending their limited time and energy trying to outwit Parkinson’s or out-run it or make it play nice.
I still have Parkinson’s. But it does not have me. I just happen to be this body that you see, okay? If my leg gets chopped off, then I’ve lost a leg. But what’s left is still me, or what’s left of me. And what’s left of me - well, that’s what I’ve got left. Some of it still works real good.
The thing that kept throwing itself in front of my attention; absolutely must viewing, was that my body was all in one piece. That may seem pretty boring to you – body all in one piece, that’s the winning result? -- but try to imagine the opposite. What if, for example, your legs were controlled by a separate control center that ripped out the communication wires that your brain needed to give instructions to your legs. Your brain still controls your abdomen but does not control your legs; your legs are controlled by something that hates you. And then the thing that hates you is not satisfied with controlling your legs, so it picks and chooses what other parts of your body it wants to control, and when, and what it will do with them. How you like them apples, wise guy?
Crossing the street, my feet froze to the ground. Cars honking. Stood there talking to my feet. Remember how to walk? How can you forget how to walk?
And I learned to hate the way it would, at random, turn my face into a rigid mask - it disconnected my face muscles, and so I appeared to have no emotions, possibly no intelligence. Which the Beast uses to set off a lot of emotion - knowing that my frozen face would almost crack as the emotions were held in, with the normal means of expressing them taken away.
My legs were full of cement and I cared for nothing and an hour later my legs were full of electricity and I cared passionately about just about everything I could see. I mean, whoa! I left the first session in a state of euphoria; I thought I was gliding down the sidewalk with the soles of my feet about 6 inches off the ground.
I announced:
I HAVE DISCOVERED A NEW PRIMARY COLOUR.
I don’t have a name for it yet. What would you call a new colour? You could not imagine red or blue if they did not exist. And how can we describe the new colour to people who never get a chance to see it? In olden days the King of England was peeved at his explorers who told him about far-away islands where something called pineapples grew, and no one could describe what pineapples taste like. Even explorers who had eaten lots of pineapples could not communicate how it tasted. So he sent a navy ship to the South Pacific to get him some pineapples, and he liked the pineapples so much, they became the most expensive fruit in the world – the dessert of kings. That’s my situation exactly.
POLITICAL TALKING POINTS
I do not consider my opinions about anything to be of consequence to anyone. But whenever someone says “holistic” or “patient-oriented medicine”, political bells seem to ring, and everybody gets categorized. So let me assist you in identifying my socio-political stance:
I am not part of any herbal tea, tree-hugging movement. I don’t drink any kind of tea, and I have four chain saws and I just love cutting down trees. I am a commercial real estate salesman. I believe the world owes me a fast car. I liked Ronald Reagan. I certainly do not take public transportation. I am in favour of plastic bags because the re-usable bags collect bacteria. I do not believe mankind is causing global warming – the sun is doing that. I voted Conservative in the past 4 elections. I am opposed to government deficits. I am not sympathetic towards creatures that chew up my garden. I don’t join groups except accidentally. I always figured Hank Williams is at the center of culture. I have not read any of the books or articles about this kind of training. They are probably all crazy. BUT IT WORKS FOR ME. Don’t ask me how or why. It is physical, and it does a lot for me. I experience it, daily. My relationship with my body has changed overnight. My relationship with the disease has changed overnight.
And my relationships with people and places and events change within hours, or sometimes days or up to two weeks, after changes in my response to the disease. I am anchored, I am whole, I try to see what is true and I try to describe it. I see beauty everywhere. I am no longer fighting, anywhere. I know my ticket is expiring, perhaps soon, perhaps not for a long time, perhaps before yours (Parkie cases are wildly individual – you can croak in a few months or go on for 25 years, and nobody knows why). But no matter what, I have had a really good ride for more than sixty years, and counting. If you ever hear me complain about anything, go ahead and smack me on the side of the head. I have absolutely nothing to complain about. Every time I roll the dice, it comes up sevens. Been like that all my life. I am definitely not in a strong philosophical position to refuse the universe or demand that it be re-designed for me.
Part way through the second session, I just had to lie there for awhile and luxuriate. I said that I have not felt so good in the past ten years. Then, searching my memory, I said I may never have felt this good before. I started throwing out everything that was not beautiful or useful – books, furniture, junk, some people. I felt a solid determination to thoroughly enjoy the whole show.
(to be continued, in my life for sure; maybe in yours too.)
Truth in packaging: Almost everything in this chapter, indeed in the entire website, indeed in everything I have ever written or said, is almost entirely plagarized, copied, imitated. I can’t help it: it is a side effect of Mirapex, like the gambling, boozing, compulsive shopping, binge eating, reckless driving, and speaking in tongues. Culture theft is an undocumented but obvious addiction, like eating up somebody else’s bag of Cheetos and then trying to explain why your hands are all orange.
Most everything written here that catches your attention is copied blatantly from Leonard Cohen; plus a lot of Blues Advice from Darcey Jerrom, plus many lines purloined from Dylan, Isaiah, Johnny Cash, Hank Williams, the Stone Coyotes, Hank Snow, Calvin Russell, Kashtin, and even a blatant rip-off of a Robin Williams joke, plus others too numerous to mention. I would have to put a footnote after every three words. And, besides, the words I have borrowed are the Words of the Prophets, and they can’t expect us to not use their words, when they are the ones who taught us to see, and taught us to use those words to show other people what we see. Prophets don’t get to keep their prophecies under lock and key. It just goes with the job that millions of us learned what they taught us.
I rest my case.
Bob Dawson
Reminder from Darcey (quoting another Prophet):
When someone points at the moon
Do not stare at their finger
Creek's Edge, oil on canvas, 20 by 28"
by Sören Dawson
Do not stare at their finger
Creek's Edge, oil on canvas, 20 by 28"by Sören Dawson
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