Be the artist of yourself

When a priest takes off his collar or a Muslim woman removes her headscarf or the pope takes off his ceremonial robes or when we all stand naked and alone; we must decide who we are without the peripherals we adorn ourselves with. We get lost and entangled in the external layers of life and we miss the beauty of ourselves; we flee from the person we are and the state in which we were thrown into the world.

However, it is precisely this state that contains all the things we need to become a true artist of ourselves, creating an art all of our own. We can do this because we are free to think another thought, therefore allowing us to redefine and resist the external definition of what others want us to be. This creates a silence in which we can approach ourselves in the crowd. We can then sit in the audience of our daily lives and assess how we react to what happens. This allows us to pick up our paintbrush and instead of using paint scattered around our cultural surroundings, we use the neglected paint inside of us to choose a reaction and paint the world in our own colours. Then we are free to be who we are...

Thinking shapes the world

The world is a framework, a scaffold, a shell of a house we are free to fill and decorate however we like. Thinking does not passively receive the world, it actively creates a world. Think negatively and the sunshine is faded and opaque; think positively and you bathe yourself in bright sunshine. Focus on something and that becomes your world. Change your focus and your world changes too.

We have far more control over the content of the world than we sometimes realise. Our reaction to the world colours our world, making it easier or harder to navigate.

For instance, don't be surprised when the world seems to confirm what you are feeling (e.g. you feel hard done by and subsequently suffer a string of bad luck) because those very same feelings are, in part, creating the world you are experiencing. It's like painting a room red and then complaining the room is red!

The world is not a settled, definitive place. It is responsive to our reaction and our emotional state because how we view the world limits what we see. We partly create the world we experience, which gives us the freedom to react and determine what is in the world. For example, flying in a plane can be scary or awe inspiring; stammering can mute your voice or make you talk louder; depression can be a darkness or a path to enlightenment; Parkinson’s can be crippling or liberating…

Future egg yolk and the prognosis of Parkinson’s

What colour is egg yolk? Yellow? Are you sure?

When you see an egg there is no way to verify that the yolk is yellow in that egg before you break it; you must crack the egg to know for sure; without an act of knowing (i.e. experiencing the object) we cannot be certain. We can predict the yolk will be yellow based on previous experience but this knowledge cannot be guaranteed in the future; it is possible one day a green egg yolk will be found.

This is one of the limits of knowledge; we know only in the present. For example, the past of an object is still thought of in the present and expecting a future is also a present thought. Knowledge requires a knower and we bring the limits of our present to the object.

When you are diagnosed with Parkinson’s you are given a long line of eggs you have to break open and eat. It is very tempting to try and predict the next egg or the egg 101st down the line will have yellow yolk. It is simply impossible to know for sure what those eggs will contain: we can only approach the disease in the present.

A shared difference

We are all different yet we are all the same

Some people flee from this contradiction and only see difference; disability, skin colour or gender etc are seen as markers separating humanity into convenient, easily defined groups. Yet such definitions are selective and shallow. They miss the shared depth literally born from the way all of us were thrown into the world; embryonic development prior to our birth formed the same structures in our bodies; this is what makes us all the same. Each instance of this process is unique as it occupies a separate position in the world and as such the person thrown into the world will have different experiences of the world; this is why we are all different.

There is something we were thrown into the world with that links our similarities and differences: Empathy for myself and other people. Empathy discovers who we are in our uniqueness and what we share with others. We can appreciate and celebrate our individuality and also the individuality of other people; we share the same ability to be ourselves even though we are different.

The best of people

It was an overcast day yet 200 people were warming up ready for the challenge of a 5K run, each person raising money for charity. My friends Gabrielle and Clare (and Clare’s dog Eddie!) were there apprehensively stretching their muscles. After months of grueling training they were ready (well, almost!), like the other 198 runners, for the charity fun run.

Gabrielle and Clare, in their first ever serious race, were raising money for Parkinson's UK. They had sacrificed many hours and many sore limbs to understand the price of Parkinson’s; I describe it as “1 for the price of 10”. They found running one step was the equivalent to the effort of running 10 steps for most people. I find Parkinson’s exacts a similar deficit onto me. As well as understanding Parkinson’s they also raised over £2000 to help find a cure so no one has to pay the price of this devastating disease.

All the runners gathered at the start and nervously waited. The countdown started and they were off. They disappeared into the circular course and we (lazily) sat down awaiting their arrival back where they started. We speculated on a good time and settled on 40 minutes. After 21 minutes the leader of the race finished. Then just 6 minutes later we spotted Gabrielle arriving at the finish and we cheered when she crossed the line. Then Clare (plus Eddie!) appeared in the distance and we cheered again as she crossed the line in just the 33^rd minute. Both a magnificent effort!

Every step Gabrielle and Clare took in training and during the race the brighter they shone hope into the lives of those affected by Parkinson's. The further they ran the closer they brought a Parkinson's cure to us all.

I am deeply touched, proud and in awe of their effort and achievement...

I’m busy with fire

Imagine the shock of the first person to create fire; the fear, awe and wonder of unleashing this power seemingly from nothing; a power that can burn or provide warmth. With it the thought was born that we can manipulate the environment to our advantage. We should all be grateful that this person shared their discovery with others. We have been busy with fire ever since.

I have been trying to control a fire of a different kind. When I was diagnosed with Parkinson’s the Doctors set my mind alight with a Parkinson’s fire (the Parkinson’s fuel had been accumulating for years) and it quickly spread fear, resignation and mourning throughout me. It burnt me, like I’m sure fire burnt that first discoverer. It was difficult to hold the Parkinson’s flame and examine its nature. But slowly I confined it to a specific place and found distance from the intense heat.

I have started to use the fire to light candles all around my being to help me understand who I am and what I am capable of. I carry the Parkinson’s torch around with me; sometimes it burns me but sometimes it lights my way…

Dealing with the thought, “Parkinson’s will get worse”

Imagine if we knew the time and date of our death? It would rule our lives; we would watch the countdown to oblivion instead of living a life. We are going to die but not knowing when or how gives us the freedom to live.

The prognosis of Parkinson’s dictates that my movement will get worse because the underlying loss of nerve cells in my brain is not challenged by current treatments; the consequences of this loss, reduction of dopamine levels, is countered by taking dopamine in tablet form.

The thought, “my Parkinson’s will get worse” is like a negative mantra that plays over and over in my head. It attempts to throw me into the future and prevents me living in the present; like a rabbit caught in the headlights of the future. But nobody can predict the course of my disease or what “worse” will mean for me. Like knowing we will die but not knowing when, knowing the prognosis of Parkinson’s but not the precise details gives us the freedom to live now.

What is “normal” in Parkinson’s?

Parkinson’s is a confusing disease to have because it plays around with notions of what is “normal”, which forms the basis of the expectations we have of ourselves. For example, 10 years ago my movement was unaffected by Parkinson’s. This “normal” movement is my baseline recording and expectation. Around 3 years ago my movement began to be infected by Parkinson’s, changing my “normal” pre-Parkinson’s movement into “abnormal” movement. But this affected movement is what I do every day so this has become “normal” for me. In other words, “normal” has become “abnormal” and this abnormality has then become a different type of “normal”.

But I still have expectations based on pre-Parkinson’s movement, even though my Parkinson’s movement is “normal” for me now. I should be basing my expectations on my current range of movement. This disparity between expecting one type of “normal” and then facing another can be very damaging.

There is a further complication. Recently I’ve started new medication and it is helping me move more freely. So, I am now facing a new drug-affected type of “normal”. Which do I choose to form my expectations, the Parkinson-affected “normal” or the new drug-affected “normal”? It feels like my medication is something external covering up the effect of continual nerve cell loss in my brain; the extent of loss and not the cover up is my “normal”. However, I can’t ignore my freer movement; it is part of me. I’m confused!!!

Due to the prognosis of Parkinson’s it is likely that I will face a constantly shifting definition of what “normal” movement is for me. One form of movement will deteriorate from “normal” to “abnormal” and this abnormality will stabilise into my current “normal”. I’m in for a bumpy ride…!

To be me

To be a bee, flying parki free

To be a tree, letting the bee come to thee
To be thee, living a life care free
To be me, to careless see

To pay a fee, is to live in the sea
To be given a key, unlocking what’s me
Please let me be, more or less than thee
Bless me, with nothing but tea

To be a kid, and want nothing of me
To be rid, of all that is hid
To lift the lid, so we can bid
On a big life, with no trace of id

To live a future, is a wingless will
To be present, is a present skill
To be past, is living all still
To be anywhere, means paying the bill

Nothing is free, except you and me

To settle for more, is an unpaid whore

To live without love, is scraping a sore

To live with love, is a touch you adore

Pain is worse, if you are cursed

To be bound in chains, until you durst

Do more than you will, then you fill

Your whole life, with all but ill

Go round

Do you remember as a child wanting desperately to have a go on the merry go round? When you first got on you were so excited you waved enthusiastically to your parents each time you passed them on your way round. This is so much fun!! But maybe after the sixth pass the waves became less enthusiastic and as the journey continued they finally stopped. You got bored and the circular motion became annoying. The ride eventually ended. You jumped off and enthusiastically asked, "what’s next?!"

Being diagnosed and having to live with Parkinson's is like being dumped on a merry go round; the first few goes round are terrifying and very disorienting. However, after a while the Parkinson's ride becomes crushingly dull and repetitive; every time you move you face the disease, every day you confront the same limitations and basic challenges of living a meaningful life alongside Parkinson's. Round and round you go! It can become very boring. This is a journey for the rest of your life; you want to get off but you don't want to know what's next...

Fixing up

My nervous breakdown taught me four lessons that have helped me live alongside my depression, stammer and Parkinson's:

1. I have a deep reservoir of resilience and determination I know I can call upon. Going through severe depression teaches you to recognise such strength. Depression is not a sign of weakness but of strength!

2. I recognised there is space for me to live alongside the depression (and stammer and Parkinson's): I was still me as I travelled through my breakdown. I had depression, I was not depression. In this space I found I could be in the audience to my own thoughts; I could hear my negativity as the emptiness it is; it is a false narrowing of the world. In developing this awareness I gained distance from the raw emotion and I could live alongside my depression (and stammer and Parkinson's).

3. Being comfortable in the space you occupy is not blaming yourself for how you occupy the space; for example, you did not choose your gender, skin colour, susceptibility to depression (or stammering or Parkinson's) etc; these things are part of what Heidegger called our "thrownness". You were thrown into the world with these things but responsibility is an effect of this process not a cause. I have depression (and a stammer and Parkinson's) but I'm not to blame for their possession.

4. Heidegger's idea of thrownness includes the observation that in life there is always one more thing to do (a "not-yet"), which means we are never stuck. We have a fundamental freedom to think at least one more thought; to react to our thrownness and circumstances in our lives; this reaction is our responsibility and our choice. This is where we are located and where we heal ourselves.

Breaking down

I was 21 when I had a nervous breakdown. It had been building for a while; my emotion balloon had been filling with black air. A pack of wolves were stalking me in the shadows of that air and I could feel (but in no way understand) a creeping meaningless to everything within me and in my life; the threads of my life were coming apart. I felt and fell into a profound sadness that obliterated all other emotions. I was displaced from the paths other people walked on; I was becoming a refugee in my own skin. Eventually I began to feel nothing. I couldn't sleep and I was constantly on the verge of tears. I would feel nothing at all then I would feel everything all at one. What the hell was happening to me?

Then it happened, my crash day. The emotion balloon had reached its limit and finally popped. The wolves were close now and at last I heard them approaching but by then it was too late. Despair clung to my life and screamed in my ears. The wolves crashed into me and began to tear me apart. My emotions spilled out of their containers and burst in mid air. Everything became incredibly confusing and meaning dropped away. My life was being shook like a rag doll; everything seemed fractured and out of place. I stood naked in the biggest storm I've ever experienced. I was lost...

Luckily I held out my hand and my family grabbed it. I saw a psychiatrist and was put on anti-depressants. For months after the world was drained of colour but the earthquake gradually stopped and I regained my stability. A daily routine was built around me and I even tried yoga for the first time. It took nearly two years for me to recover.

Going through my breakdown taught me a huge amount about myself: my resilience, my fighting spirit, my innate love of life and willingness to learn. You have to go through depression to understand how to live alongside it; I never allow the emotion balloon to inflate that much again…

Fall to climb higher

Your fingers grip the bare rock and you strain every muscle to pull yourself up onto surer footing. Exhausted, you wipe the sweat from your forehead and catch your breath. Looking up you see a shear rock face extending thousands of feet in the air. Doubt fills every cell of your body. You mutter to yourself, "I can't do it..." You reject your ability to cope with the climb and in doing so you reject yourself; letting go of the rock you fall two feet onto the ground. You look up again, "What if I fell from way up there?"

But you hurt yourself more by falling only a few feet rather than trying to climb and then falling a hundred feet. This is because, emotionally, you learn how best to fall as you get used to greater heights; you fall and roll, use safety mats, ropes and eventually a parachute. Rejecting your ability to cope at higher altitudes risks inaction and loneliness. 

Risk falling as a means to climb higher!

The nature of scientific research

The following article appeared in the Summer 2013 edition of the Progress Magazine published by Parkinson's UK (see the highly informative Parkinson's research magazine; http://www.parkinsons.org.uk/sites/default/files/publications/download/english/progresssummer2013.pdf):

Why do research? It may be a strange question to ask in a magazine devoted to research and it has an obvious answer (a cure!) but it is important to understand the nature of research.

Research is like an unpredictable, slowly erupting volcano; within the volcano everything is fluid and constantly shifting. Sometimes a trickle of larva emerges which gradually builds and solidifies into knowledge. New treatment is built upon this solidified rock.

The analogy highlights the fact that research is slow and uncertain and deals with uncovering unknowns. When larva does emerge and adds to the scientific landscape it changes the context of previous knowledge, leading to new questions. 

Science never stops. Research is hard, shifting, precarious work and can fail to find anything. Nonetheless, the accumulation of successful research has huge practical potential, modern life is built upon it, and needs to be supported.

As a sufferer I want treatments and solid answers now but as a scientist I know today's research will take time to solidify into practical knowledge that leads to new treatment.

Research is important to me. When I was diagnosed with Parkinson's it felt like I was given a blank page; I didn't know how to fill that page and understand what was happening to me. Thankfully researchers had begun to unravel the causes of Parkinson's and the more I read, the more space I could fill on my blank page. I find understanding a great comfort.

Not only does research give hope for future treatments, it also provides the means to understand the strange Parkinson's landscape sufferers and their families are taken to when diagnosis comes. That's why magazines like "Progress" and public lectures are so important.

On the beach

The sun is strong today! It beats down on me and I feel its oppressive heat; even the sand around me burns. I look towards the cool, refreshing sea and see the person I thought I was going to be floating in its cool embrace, immune to the Parkinson's sun. I try to walk down to the sea but the sand burns my feet. I sit down on my towel again, head in hands. I put some dopamine sun cream on but I know I will burn eventually...

Freedom

Every person is born free of chains and is free throughout their lives. This freedom is present at each instant of our lives; I guarantee you are exercising your essential freedom right now.

You are free to have at least one more thought…

Within this ability is the seed of choice and hope; the freedom to change the contents of thought and the world; to develop and evolve; to cope and thrive.

That warm feeling

Out of the array of symptoms on the Parkinson’s buffet table, one of the most distressing is urinary incontinence: yep, that's right, the almost constant feeling of being on the edge of wetting myself, pissing my pants, warming myself on a cold day; the panic of feeling urine escaping from my bladder and dribbling down my penis.

Bladder control has a huge psychological component because it is one of the first bits of our bodies we learn to control as young children; losing control stirs old feelings of uninhibited shame. Because of the vivid connection to early childhood it pushes the thought, "Has my Parkinson’s caused me to regress this much?!" 

This is one of the many indignities of Parkinson's.

O, you will have to excuse me; I've felt another dribble...!

Silent space

It is important in music to not only play the right notes but also to know when to be silent; to allow space for meaning to grow from the silence. Sound needs to be juxtaposed with the gaps between each note.

In contrast, the sound of negativity can be an incessant, continuous, single musical note that drowns out the meaning of everyday life.

Break the negative sound by allowing silence to flood in and clear away the debris of toxic negativity. Only in such a neutral space can the positive find meaning. Without neutrality as a stepping stone, negative corrodes the positive and your emotions become a battleground. Disengage from the music of negativity and inhabit the silent truce to allow positive music to extenuate the meaning of everyday life.

Cake or biscuits?

The dappled sunshine of a clear blue dawn fills the new day and illuminates the cake stall I'm busy setting up. I've been making these delightful circles of goodness all my life: there's caring chocolate cake, intelligent macaroons, dry sense of humour cheesecake, understanding and helpful scones, good listener quiche, loving meringue pie. On one corner of the table I carefully arrange Parkinson's disease and stammering biscuits.

I scatter amongst the cakes many books on Science, Films, Philosophy, Art and the Beauty and challenge of life.

My stall is finally ready...

"Ladies and Gentlemen, step right up and take a look at the biscuits I have to offer; bitter, chalky, sour and they stick in your throat. Forget the cake, focus on the Parkinson's and stammer; look, these biscuits are burnt and crumble in your hands. They're really expensive because the suppliers force me to buy them. No, not the cake, the biscuits, the biscuits!"

Parkinson’s parcel

When I was diagnosed I was given a Parkinson’s box to put my life into; some things fit in the box while others I have to leave behind.

Each day I fill up my box and post it to myself. When the parcel arrives I very often put its contents to one side and intensely scrutinise the Parkinson's box; its shape and size, is it smaller than yesterday’s box? I forget to enjoy the things I can do, the things I send to myself. The box is incidental; what’s inside is all.

Curse of consciousness

We find ourselves in a pitch black room and we have been given a torch with a very narrow beam. In search of comfort in the darkness we shine our light at one particular place and assume the comfort (even if it is a harsh, self-defeating comfort) we feel is the truth. Some remain fixed here but others find the courage to look elsewhere, to find their meaning in the searching and questioning.

All are looking to alleviate the burden of self-awareness. The curse of consciousness arises because we become aware at the mid-point of a process and as such can never understand what happened in the first half (we aren't aware of the journey to the dark room). We lack meaning because we missed the first half of the movie! All we can do is attempt to reconstruct how we came to be, no matter how accurate or inaccurate our speculations are; all thought is born from this...

"The touch is sand…"

Lyric by Robert Pollard, musical genius, Guided by Voices

My mind reaches out to my body, across the void and through the fog, to express its foundational purpose; to play the strings of my body to generate the music of functionality and life itself. My mind touches the strings but the hand that reaches out collapses into a pile of sand. I try again but my mind’s influence disintegrates into tiny grains of sand. I look up and see a vast desert surrounding me…

Foundations

"I am he, as you are he, as you are me and we are all together..."

I am the walrus

I look at one chimp-like creature in particular with intense curiosity and her eyes return my gaze. I see the potential of the whole of humankind in her eyes. The artist, engineer, economist and executioner of nature, natural selection, then moulded, over 4 million years, that creature within its changing environment. The pelvis is tilted and broadened causing the creature to clamber onto her two legs and its brain to expand and deepen; tools are forged and culture is created......until I face myself in what that creature has become.

This is our heritage and the source of who we are; our resilience, adaptability, skill and determination; something we can call upon in our struggles and everyday life. We are the front line of this evolutionary change but we build upon the efforts of all our ancestors.

A dancer, dancing

“I won’t take no for an answer, I was born to be a dancer…”

Bugsy Malone – lyrics by Paul Williams

Can you hear that music? Can you feel it? Yeeeeeeeeeeesssssssss! Gather together your crippled bones and fractured mind, lay down the world you carry on your shoulders, abandon doubt and move past fear, forget the past and stop living in the future…and start dancing!!!

I don’t mean the Foxtrot or the Charleston; I mean a light-footed mind avoiding the gaps, a celebration of what is present, an appreciation of those around you, seeing the good, living a life and not just a disease. We are all dancers, it’s just we are weighed down by the anchor of taking “no” for an answer. Why not say “yes” and cast off the self-imposed anchor?

“Natural” remedies for Parkinson’s disease

It is completely understandable, when faced with any disease but especially a chronic and progressive one, to reach for any potential remedy or cure. But sometimes you can reach too far into spurious “natural” remedies.

Describing something as “natural” does not make it more likely to succeed; as if Mother Nature is handing out tried and tested compounds like a kindly old woman handing out tea and biscuits. Also, there is no opposition between “nature” and man-made “chemicals” because nature is a monumental chemical factory. For example, levadopa (the main drug treatment for Parkinson’s) is a precursor to dopamine but dopamine is naturally occurring so why is it “unnatural” (implying harmful) to take it in tablet form? When does the manipulations of humans render nature (assumed to be good) into man-made (assumed to be bad)? Bread doesn’t occur in nature, it requires the manipulations of wheat and yeast by us, but is seen as natural. You could argue that bread uses “natural ingredients and not chemicals” but nature is made of chemicals!

Most natural remedies are based on subjective experience and the testimony of one person. It probably goes something like this: I eat some chocolate and find my symptoms improve; therefore, the chocolate must be helping me get better; simple cause and effect. However, this misses many other possible reasons for the improvement; normal variation in symptoms, the feeling I’m doing something to help myself, the sugar in the chocolate gives me more energy etc. There could be many contributing factors that are the cause (and many more that are incidental to the improvement).

For 400 years the “reductionist” approach of modern Science has separated out the potential causes and tested each one in turn to see which one has the biggest effect. For example, you want to know what causes water to heat up. First you add the same amount of water to a small container and a large container at room temperature (the variable you are testing is the size of container) but see no increase in temperature. The size of container does not cause water to heat up. Next, you fill two small containers with the same amount of water at room temperature but you put a flame underneath one container (the variable you are testing is presence of the flame): the water heats up! Therefore, the flame is the cause of warmth in the water. If you used one small container and one large container and applied the flame to the larger container it is impossible to see the real cause; the size of container and presence of the flame are both varying at the same time (the equivalent is happening in the chocolate example).

The method of Science (separate out the potential causes and test each one in turn) is immensely powerful. Modern life is build upon it. But Science, by its very nature and by the nature of the complex world it tries to describe, is slow and laborious; many variables need to be rigorously tested. In the void of knowledge and practical application (e.g. treatments for Parkinson’s) there can flow many spurious claims for cause and effect relationships (e.g. chocolate (cause) results in improvement (effect)). Without applying the Scientific method, care should be taken over such claims.

See http://www.senseaboutscience.org/

Blind for 28 years

I learnt to see 28 years after opening my eyes...

During those years my voice belonged to my stammer. The deafening explosion and shell shock of a stammering block sent me running from myself until I could no longer locate my voice and I lost myself; I became my stammer.

I picked up the trail of my lost self by learning to hear beyond my stammer to the fluent parts of my speech; this helped me see myself (I am fluent when I think) within my voice and alongside my stammer. I did this by stretching the first sound of the word beyond the stammering block and then linking onto the rest of the sentence (sort of beating the stammer at its own game). It was a revelation! The ringing stopped in my ears and I could hear my voice! I could hear me!

This has helped me to find peace from self-hatred, understand my thrownness (my stammer is an acceptable part of me) and see my not-yet: I am free to be me in my potential and not my limitations.

Thank you Dr David Ward for helping me find my voice.

Live the other things

Living with Parkinson's disease can become "Parkinson's and etc"; the sole focus can be the corners and dead ends of the disease. But life doesn't stop when you are diagnosed; it changes your focus for sure but there is still space for you. Stretch into the space and don't forget to live that etc!

Thrownness locks and unlocks doors

We are thrown into the world with a specific set of keys. During our life we encounter a range of different doors and we test if they will open. When we go through the doors that our keys unlock they lead to other doors that can lead to good or bad experiences.

The state in which we exist is limited but pregnant with possibility. Parkinson's is part of my thrownness, I have a key that opens that particular door and I must cross the threshold, but it can lead us to resilience and determination. We had no choice over which keys we got but we can choose our reaction to the doors that open (and those that remain closed) and where we find ourselves.

We don't know whether one of our keys will fit nor what is behind each door but it is our lot in life to keep on trying the locks...

The cul de sac of "should have"

I was happily driving along when I encountered a traffic jam; that's when the "should haves" started:

Should have taken a different route...

Should have set off earlier...

Should have done more...

Should have done it differently...

Should have done better...

Should have known...

Should have lived a better life before Parkinson's hit...

Should have been married before Parkinson's hit...

Should have coped...

Should have been different...

When this happens I get out of the car and walk to the nearest cul de sac and go round and round. "Should have" gives you no exit; there is no possible way to change the past so no possible way to act on and resolve the "should have".

Live in the present; this is the point in time where you can drive around the traffic jam.