Appreciation

If I died tomorrow (fear not dear reader, this writer will be writing the day after tomorrow!) I can say in all truthfulness, “I’ve had a great life”. You may say in disbelief, “But your stammer, depression and your Parkinson’s?! You don’t have children. You’ve never been married. You have been lonely, frustrated, lost!”

These things are true. But they do not dismantle my life. I love and spend time with some extraordinary people. I continue to explore the wonderful complexities of life and my place in this world. I feel privileged to inhabit my mind and to have access to the knowledge, experience and wisdom I have accumulated. I have absorbed some remarkable art, music and ideas; I enjoy the challenge and thrive on provocation and exploring different intellectual landscapes.

It is true that in death all this will fade away. But I can say, “I lived my existence to the best of my ability; I tried…” Thinking about what I will lose when I die makes me think of the extraordinary gifts and opportunities I have at this very moment (despite my problems and difficulties). Because life is robustly fragile we should live at the edge of our present and continue to learn and develop. Looking far into the distant future increases the risk of tripping over something in the present and falling off the edge of life without actually living a life.

Appreciate all that we were thrown into this world with and enjoy the process (and not just the goals) of life.

You are all stars that guide me

I am sailing on the oceans of my life in a little tug boat. Sometimes the sea is rough and the storms are raging. At other times the sea is calm and the sunshine is pleasant. At every moment you are all there as stars shining brightly next to me, illuminating and animating my life; you guide me, one step at a time, as I travel to distant shores. I thank you all for sharing your present with me and for your care...

Digging for a cure at the Oxford Parkinson's Disease Centre (OPDC) - Part 1

How do you find a cure for Parkinson's?

Imagine you travel to a field in the middle of the countryside. You've been told there is something buried in the field; something valuable beyond words, like a cure for Parkinson's. The problem is, you don't know where in the field the cure resides or how deep you will have to dig for it. You also don't know what a cure will look like. You stand in the middle of the field trying to decide where to start. How do you find a cure for Parkinson's?

You gather a team of expert diggers and based on what other researchers have found in nearby fields (and for other diseases) you choose an area in the middle of the field. You start digging and go through several layers of soil. As you dig you analyse the components of the soil for any traces of the cure. That's the difficulty of scientific research; because you are attempting to uncover something hidden from view you only have knowledge from previous layers of soil to go on; you try to make sure as far as you can that the particular part of the field you are currently studying will hold the vital clue to where to dig next, or how far you will have to dig down to get to a cure.

What is the OPDC?

I arrived at a particular part of the Parkinson's research field when I visited the lab of Dr Richard Wade-Martins at the Oxford Parkinson's Disease Centre (OPDC). The OPDC is an interdisciplinary research centre, which means that clinicians (investigating better ways to diagnose and treat Parkinson's), brain scientists (investigating the nerve cell networks that go wrong), cell biologists (investigating what goes wrong in cells) and, linking these approaches together, mouse geneticists (investigating Parkinson's in mice) are under one roof. This ensures the links between human patients and the knowledge generated from cells, nerve cell networks and model organisms is as close as possible. In other words, they are busying digging in multiple parts of the Parkinson's field and increasing the chances of finding that vital clue.

From skin cells to nerve cells - Induced Pluripotent Stem Cells (IPSCs)

Dr Wade-Martin's lab investigates cells and mouse models of Parkinson's. The first part of the field I was shown contained some amazing biology. Researchers in the lab know enough to take skin cells from human patients and convert these into nerve cells, which are the same as those cells that go wrong in Parkinson’s affected brains. I will just let that sink in. Look at your skin...the tissue that covers your body can be changed into nerve cells! Amazing! These cells are incredibly valuable because they contain all the genetic changes (known and unknown) that cause Parkinson's. Therefore, understanding and treating what goes wrong in these nerve cells will give a more comprehensive view of what goes wrong in Parkinson’s. Studies using these cells will be a huge leap forward in understanding and treating human patients.

Dopamine producing nerve cells (green cells) created from the skin cells of Parkinson's patients. Amazing!

Digging for a cure at the Oxford Parkinson's Disease Centre (OPDC) - Part Two

The role of LRRK2 in autophagy

One of the genes known to cause Parkinson's is LRRK2. Sergey Brin, one of the founders of Google, has a mutation in this gene and therefore has an increased chance of developing Parkinson's. LRRK2 normally passes messages to other proteins in the cell (in a game of Chinese whispers called phosophorylation) and these proteins carrying out processes in the cell; LRRK2 is sort of the manager in a factory. In Sergey Brin’s brain (and other affected by Parkinson’s), LRRK2 becomes hyperactive and gives out messages to everyone, causing chaos; cells normally work by keeping calm and balanced.

LRRK2 has been implicated in a process called autophagy. Imagine the cell is a chemical factory, producing vital chemicals to make sure the cell functions properly. However, like a real chemical factory it produces waste products. Autophagy is the process whereby the cell cleans up after itself and chucks away the rubbish it generates. Mutations in LRRK2 can disrupt the cleaning regime of the cell; eventually accumulated rubbish makes the cell become chaotic and it does not function properly. Eventually the cell begins to malfunction and it dies, therefore causing a reduction in dopamine levels and the symptoms of Parkinson’s.

Work in the lab is trying to discover which part of autophagy LRRK2 controls; is it when the cell is preparing to clean (induction), getting the bin bags ready (autophagosome formation), picking up the rubbish (lysosome fusion) or throwing the bin bags away (autophagosome breakdown). A neat experiment is being used to work out where LRRK2 is affecting this process. There are proteins that give off specific coloured light (e.g. green). These can be expressed in cells and seen under a microscope; to provide a contrast, the rest of the cell is labelled red with a chemical. At the start of the process of autophagy the coloured protein will give off green light but at the end when the protein is picked up ready to be thrown out the protein no longer produces green light (due to the acidic environment of the autophagosome). Therefore, in LRRK2 mutant cells from patients the proportion of green to red will tell you where the process has stopped; more green means mutant LRRK2 has stopped the process early and conversely more red means it stops it late in autophagy. This is important to know because it tells us which drugs to potentially use to correct the process.

Treating alpha-synuclein?

Another major gene implicated in Parkinson's is alpha synuclein; alpha synuclein protein clumps together to form Lewy bodies in Parkinson's affected cells. Dr Wade-Martins lab published some work this year (PNAS 110 e4016) showing they created a mouse with three copies of the alpha synuclein gene (normally mice have one copy). This forces the cell to make 3x the amount of alpha synuclein protein; Lewy body formation (common in Parkinson’s) is therefore more likely in these mice. Indeed these mice show symptoms of late-onset Parkinson’s. There are humans who also have three copies of the alpha synuclein gene and develop Parkinson’s. Members of the lab have been trying to use drugs to break up the Lewy bodies, prevent cell death and stop Parkinson’s from developing. It is early days but this work demonstrates the benefit of having multiple specialists in the same research centre: cell work can lead to mouse work which can lead to testing drugs to stop what is happening in the cells of the mouse, and ultimately human sufferers.

After my visit to the OPDC I gained renewed hope that one day soon the crucial piece of soil in the Parkinson’s field will be lifted to reveal a cure for this devastating disease.

Listening to the echo

When you recall a piece of music in your head you are listening to an echo of your past; in the absence of the original physical experience recollection reconstructs the experience again. The moment you access the sounds, either outside of yourself or later within yourself, the experience is filtered and made sensible by a sense of self and its memories.

The mind is full of these echoes, which reverberate around the mountains of understanding and valleys of memories within the self. For example, when I talk to someone I hear the words in my head as I formulate what I’m going to say; these words are echoes from the vocabulary I originally learnt growing up. Then, in a separate act of listening, I hear the sound of my own words spoken aloud. Finally I hear the echo of the words I have just formulated and spoken. I listen to these echoes both as the instigator of what I want to say and the means of producing the sounds.

When somebody talks to me I do not hear the formulation of the words in the other person’s head; I do experience the physical impact on my eardrums when the person is verbalising their words. But, I only hear the echo of myself listening to the external sounds, not the echo of the formulation of words.

This is a crucial difference: when another person judges me I cannot hear or do anything about the formulation of the words in their head; I am not the instigator of their thoughts nor do I make the decision to verbalise their thoughts. I can only do what I think is right and react to the consequences of my actions (good or bad) and any possible judgements as they arise. However, when I judge myself I can listen to the echo of myself internally formulating the words and act as border guard to ask whether that judgement should populate my mind. By overhearing the echo I can stop unhelpful judgements impacting my emotional state.

Therefore, you react to other people when you are judged and overhear the echo of yourself when you judge yourself. Both allow the freedom to choose to believe the judgements or not.

Why can’t Parkinson’s just leave me alone?

Another part of the heath. Storm still.

Enter King Lear.

“Blow, winds, and crack your cheeks! rage! blow!

You cataracts and hurricanoes…

Dismantle me! Cleave me from myself! Rob me of my body, scatter my hope into the raging wind! Prevent me from finding love and allow me only to hate you! Dry up my heart and set my limbs in stone! Deafen me with your thunderous proclamation of prognosis and exhaust me with rage!

Yet, what is this to me? A mere drop in my ocean. You have given me and taken away so much already. Have I given up? Have I stopped learning? Have I lost myself? I stand here resolute! I am proud of my place in this world! You will not shake my resolve. You will not conquer me! Grind me down, break me and you will not break me! What is one more tear to me when I've wept enough to flood your fire from my brain! The more you persist the more I will resist and the more I will consist of me!

Can't you just leave me alone? No? Then do your worst Parkinson's! I’ve been preparing all my life. I’m ready to be me!!

Playing the Parkinson's card

When you are diagnosed you are forced to move from the life you inhabited to a Parkinson's apartment. On arrival, you are greeted by a welcome pack containing bits and pieces you might find useful as you settle into the rest of your life. There's an endless supply of sleepless nights, frustration and self-fulfilling anger, fear and uncertainty...

At the bottom of the box is your Parkinson's card. It's your proof of membership to this most exclusive of clubs. When you are struggling with something because of your symptoms you can "play the Parki card" to let others know to help you. Of course, and in no way do I condone this utterly unethical behaviour, you can play the Parki card at anytime; when you do something wrong; when there's washing up to do; or you simply want a rest. I must say I have yet to test out the unethical use of the Parki card but such a possibility shows we still have choice within this disease!

And, yes, I know the story of the boy who cried wolf...!

"I don't know"

We are terrified of saying, "I don't know". We are a species that feels the incessant, abject horror of the void created by the curse of consciousness; we are thrown into the world with self-awareness, which creates the desperate need to fill the world and our place in it with meaning. We are set up to do this constantly and we fill the void with profundity or nonsense. It is such an automatic consequence of thought we hardly notice it; thought must be filled...with anything. It doesn't matter what, as long as the void is out of sight and the curse of consciousness satisfied.

Self-awareness sets up the means of questioning why without giving us the means to know the answer; we are limited beings. So we pretend and pretend and pretend until we deceive even ourselves that we've found the answer. For example, Christianity explains the world by inventing a kindly father figure and creator. But Christianity is aware of the void too and therefore must justify itself; it does this by saying we are born into sin and we must take on the responsibility for this sin (this "kindly" father figure created us with sin then blames us for our sinfulness...). What does Christianity prescribe to alleviate our guilty sin? Go to Christ and take on the greater guilt of Christ's sacrifice, a guilt that can never be repaid. The balm wounds while it heals perpetually. What exquisite and self-justifying torture! Thus, Christianity ensures its own survival in the void of self-awareness.  

Have the courage to say, "l don't know"; we incessantly seek meaning because we are aware of the void and the need to justify ourselves. We would rather fill the void with nothingness than live with the uncertainty of not knowing.

One of the main lessons I've learnt from having Parkinson's disease is the need to live with uncertainty and the lack of meaning. I was thrown into the world in a specific state (which includes a susceptibility to Parkinson's) but in no way did I choose that state (just as I did not choose whether I was male or female, had two eyes or not). The meaning of this state and the reasons why only stretch to this; it just is. "The rest is silence" (Hamlet). I can live with the void of not knowing why.

You can too. Everybody say, "I don't know". Again, "I don't know". That "I don't know" is not a defeat, it is a new start and an honesty born of fearless self-awareness. It acknowledges there are some things we cannot know. But it also encourages further exploration and development; "to know that you don't know, is to be wise" (Socrates). It loosens the horror of not knowing. It is a liberation...

Where does it hurt?

We have the ability to point to where it hurts in our bodies and let others know we are in pain. Such self-awareness is one the wonders of the universe!

Yet, ask me where my Parkinson's hurts and I can't point anywhere. Parkinson's is in me. It surrounds me and confines me; it seems to be everywhere. It's like I'm on stage and the lighting, sound effects and cues that determine the necessary context of the play are controlled by Parkinson's; but we are working from different scripts. Therefore, the things I do and my intentions are mismatched to the plans Parkinson's has.

Where does Parkinson's hurt? My head? My heart? I think it hurts my emotions. Before I was diagnosed I still had Parkinson's but my emotions weren't burdened by the knowledge of the prognosis. Parkinson's hurts now because if feels like I am not in control of the context of my life. Parkinson's is a burden because it impacts me emotionally. 

However, emotions can be healed by thinking. Try it. Look into the current state of your emotions. Think the opposite; do you feel different? You may not believe it (thinking doesn't change the fact I have Parkinson's) but the thing you are doing at this moment, thinking, is incredibly powerful in dealing with any emotional pain. We can change the world through changing our emotional reaction to the world. That is how we can heal the hurt of Parkinson's...

Shrunk in the wash

I suffered a nervous breakdown when I was 21 (see my post: "Breakdown" http://dialoguewithdisability.blogspot.co.uk/2013/08/breaking-down.html). 

In hindsight, that point in my life felt like I was wearing a prison uniform underneath my real clothes. Even when I had a shower or changed clothes I would still be wearing the uniform; I thought I could never take it off.

However, hard work, persistence and CBT counselling have allowed me to exchange that depression uniform for something resembling my real self.

When I look back to that time it is very tempting to inhabit that uniform again, to feel the depression, pain and distress. But it is important to remember that during the intervening years I have washed the uniform many times and during the washing the uniform has shrunk as I have grown. The uniform is tiny now; I can hold it up and realise it doesn't fit any more. My breakdown is part of my past for sure but the emotions I felt at the time no longer apply to me. I have learnt to cope. I can try to fit in those tiny clothes or I can choose to inhabit the person I am now.

This is what a Godless world looks like

I saw proof today there is no God. I attended a scientific presentation on childhood Parkinson's disease. The speaker, a clinician, showed us videos of the symptoms. There were young children in the end stage of Parkinson's, unable to move; locked inside their tiny bodies. It upset me greatly. Especially since they were 'cognitively spared'; their minds were intact. It shatters my heart into a billion pieces to think what those children thought. I weep a thunderstorm of tears at the sheer, disgusting cruelty of such suffering.

There is no God. At all.

“Mine eyes are full of tears; I cannot see”

King Richard II by William Shakespeare

When you are diagnosed with Parkinson’s disease, it feels like you are cast in the role of Shakespeare’s King Richard II and Parkinson’s is the usurper of the crown Bolingbroke. Parkinson’s deposes you and takes what should be rightly yours: the sovereignty over your body and the conscious control you have. It seems you have no choice but to resign from yourself and declare:

“I must nothing be;

Therefore no, no, for I resign to thee.

Now, mark me how I will undo myself…”

Note how Richard empties himself out (“I will undo myself”) by failing to identify with his new role as citizen and not King (“I must nothing be”). Parkinson’s, with the insidious prognosis (CHRONIC, INCURABLE, PROGRESSIVE), can push you into believing you have lost yourself and therefore you must start to dismantle your life, declare yourself bankrupt and empty out the world around you. If you, like Richard, cannot see yourself within a alternative role from the one you expected to have, you will:

“With mine own tongue deny my sacred state…”

You deny yourself and end up knowing:

“I have worn so many winters out

And know not now what name to call myself…”

It is natural to start to blame yourself for Parkinson’s as Richard blames himself for giving up his crown:

“If I turn mine eyes upon myself

I find myself a traitor with the rest

For I have given here my soul’s content…

Made glory base and sovereignty a slave,

Proud majesty a subject, state a peasant…”

By taking on the responsibility of Parkinson’s (you “made glory base”) you have a little hope that you can cope in the future. But this makes it more likely that you will allow yourself to become Parkinson’s:

“How soon my sorrow hath destroyed my face…”

The fear of losing our identity makes us retreat from the responsibility and we deny our knowledge of Parkinson’s because it protects us from the accusation. We end up in a perpetual oscillation between trying to control the future and denying there is anything to control.

“Fiend, thou torment’st me ere I come to hell…”

However, Parkinson’s is not King, he is a citizen. Even within Parkinson’s you retain sovereignty in how you react to situations. Richard breaks his mirrored self-reflection and therefore loses awareness of this fundamental choice:

“As brittle as the glory is the face,

For there it is, cracked in an hundred thousand shivers…”

You don’t have to crack your mirrors or deny yourself in the face of your disease.

On Parkinson's disease

I wear shorts in the Antarctic
I light a bonfire in the desert at midday

I wear my pyjamas to a formal dinner

I laugh when I cry

I cry when I laugh

I use a spoon to cut the grass

I look at a mountain through a microscope

I run the race by standing still

I wear a space suit in the bath

I eat when I'm full

I rest my bones by moving my bones

I'm asleep when I’m awake
I walk when I'm sat down

I scream when I'm silent

I'm naked everywhere
I am out of synch with my own rhythm

I'm cold in the Caribbean

I'm gaining by losing myself

I am displaced but I can still be me

I have Parkinson's disease…

The trails we leave behind

“Falstaff sweats to death, and lards the lean earth as he walks along...”

(Prince Hal in Shakespeare’s Henry IV Part One; Falstaff (a brilliant character) is a rather portly Gentleman…)

We are all like a snail, slowly moving through life from moment to moment. As we proceed towards an unknown destination, we leave a trail behind us; the things we have done, the people we have met, the mistakes we have made and the good that we have created. The trail that Falstaff "lards" the earth with is both a hazard and nourishment for those who encounter him. Such is life. Wherever we end up, we leave behind us a trail that can instruct those who come after us.

“Ay, of a snail, for though he comes slowly, he carries his house on his head…”

(Rosalind in Shakespeare’s As You Like It)

We are all like a snail, carrying the person we inhabit, the “house” we own, in our heads. We can decorate our interior with ideas and by learning we can build extra rooms to extend our houses. Sometimes this can be a heavy burden and we bow our heads:

“And shining morning face, creeping like a snail unwillingly to school…”

(Jaques in Shakespeare’s As You Like It)

Or knowledge and understanding can lift us up and protect us:

“But I can tell why a snail has a house… to put’s head in - not to give it away…”

(The Fool in Shakespeare’s King Lear)

In our encounters with Parkinson’s (or any difficulty) we can learn from our own trail as we look back or by looking around us we can see the journey of others and be inspired. This helps to develop the house we live in to protect us from the difficulty and to learn to live with and alongside ourselves.

You can say that again

Inspired by the Two Ronnies; original sketch written by Gerald Wiley (search for “You can say that again, Two Ronnies” on YouTube)

Charlie meets Bert in a pub.

Bert: O hello Charlie!

Charlie: Hello Bert! How’s things?

B: They’re well Charlie... I heard you’ve got the old Parkinson’s. What’s that then?

C: Yeah, Bert, diagnosed last week. Put a downer on that day, believe me. Parkinson’s, well its, er, its…

B: A pain in the foot? A pain in the backside? Makes you want to interview famous people?

C: No! It’s a neurological condition!

B: O I see.

C: These cells in my brain are dying, see? And these tiny cells, they are what control my movement.

B: O I see! Sorry to hear that Charlie… And where did you get this disease thing from then?

C: I, er, let me see, I, er…

B: Got it at the supermarket? Got it for Christmas? Got rid of it already?

C: No! I don’t think I got it from anywhere. I’m trying to, er, trying to…

B: Think it over? Think it through? Not think about it?

C: Remember what the Doctor said! He said some genes are involved but they mostly don’t know. Strangest thing not knowing what, er, what, er…

B: Time it is? What you’re having for tea? What is beyond the edge of the universe?

C: No! What caused it! If I knew that, then I could've avoided it. There are things to, er, things to, er…

B: Say at a time like this? Avoid at all costs? Things to do?

C: Yes! Things to do! Like take medicine and do exercise. And think positive like. That kind of thing!

B: Does that include having a pint of the good stuff? What’ll be?

C: I’ll have, er, I’ll have, er…

Making it permanent (or not)

Parkinson’s disease sketches out a life for me using a pencil. It is a foreboding, restricted and faint life full of storms and difficulties. I would normally believe the world that Parkinson’s presents to me in that pencil drawing. In the past I would believe in it to such an extent that I would go over the lines with a permanent marker pen to make them solid and impenetrable.

It is our reaction to the lines drawn in pencil by Parkinson’s that determine the meaning of the drawing. It is equally valid (but more helpful) to rub out some of the lines or add some of your own or only mark with permanent marker the lines you want to. We have to live with certain aspects of the drawing but we don’t have to make them our permanent focus. There is always room to choose and change…

We are the walking wounded

"And then they came, the walking wounded,

Straggling the road like convicts loosely chained..."

From "Walking Wounded" by Vernon Scannell

It is inevitable that we become one of the walking wounded during our lives; it is our natural state. We all carry our wounds around with us and wear our bandages to shield our eyes from that which is most natural in us. We walk onto the cleared aftermath of our battles with the purpose of finding the balm to sooth us. We can allow ourselves to see it is too early and too late because the battle itself is the balm and we must await the next skirmish to heal our latest hurt…

But we can choose to resist fighting our future battles in the present by allowing the hurt just to be; by not engaging with it and living beside it; this will heal our emotional wounds without paying the price of wounding ourselves further.

Our wounds can fester and cause us further damage or we can see through and beyond them to heal ourselves...

Live the dash!

On your gravestone it will read: born on this day - died on this day. Your whole life is compressed into that dash.

What does it mean to be born? What does it mean to die?

It is impossible to verify whether you were something before you were thrown into the world (born) or you will be something when you are thrown out of the world (die). The world is the place where we know we exist (we are something here and we are aware of it) and this existence is filled with thought and sensation. Thought has a limited structure (e.g. we are aware of thinking our own thoughts) and is filled by sensations from our limited senses; our ability to think and sense are both generated by the process of being born. The structure of thought and the senses fall apart when you are thrown out of the world. Therefore, you were nothing that could experience before being born, in life you experience and then you become nothing again.

Why do we try to grasp nothingness? It is because of the value of the something we have in life. Instead of trying to understand the nothing and built comforting religions to cover up the “horror” of not knowing, allow the hard edge of experience, beyond which “no traveller returns”, to reflect back to this life and to the state in which you exist. As Heidegger says, thinking of our birth and death brings us face to face with what we have gained in being born and what we will lose in our death; in other words, it brings us back to ourselves as we exist in this present moment. This means being aware of things like Parkinson’s but also seeing this as only a part of you.

“Our little life to rounded by a sleep” but what is important is being awake when you live this life in this world. Live the dash!

I am a chair who wants to sit down and rest

I feel like a chair who, after working all day being a chair, wants to get home and have a rest; but when the chair sits down and rests he does the exact same thing he does when he is busy: being a chair!

Parkinson’s is a chronic disease; it accompanies me wherever I go and whatever I do. This disease of mine feels like a job I never applied for; the reward for working so hard is moving Parkinson’s around my life, like moving a tonne of sand from one end of a long corridor to the other…and back again…and again… Even when I lean my spade against the wheelbarrow and go for a rest I fill my pockets with sand while I am sat down.

No matter what I do I will be Parkinson’s. Equally no matter what I do I will always be me. The art of living with a chronic disease is maintaining awareness that being yourself alongside the disease is also a chronic condition…

Going on a diet

The prognosis of Parkinson’s is like a big spider that wanders after me wherever I go. If I turn around and try to kick it away another 8 spiders appear and follow me. If I then try to kick these away another 16 spiders appear. I’ve learnt the habit of trying to run away from the spiders by being constantly active and exhausting myself in achievements; whether it is writing, going to Yoga, visiting family and friends. I think if I can stay ahead of the spiders then I can keep my disease from overwhelming me.

However, trying to run away is the same as trying to get the spiders to leave me alone. Actively engaging with the prognosis just causes my fear to increase and more and more spiders to appear. It is a self-fulfilling prophecy. It's like I am exhausting myself by trying to bake and eat as many chocolate cakes as possible to give me enough energy to run away before the spiders overwhelm and crawl all over me. It is inevitable that I will vomit up all that cake and the spiders who follow me will eat it and grow stronger. Therefore, I need to go on a diet and eat less cake and try not to exhaust myself. I need to learn to not engage with the spiders because it is my focus on them that keeps them in sight. By living alongside my disease and trying to eat sensible portions of cake then the spiders will walk past me and disappear into the unknown future.

This is my 250th post!

Living with Uncertainty

Where do my thoughts come from? You can answer "your brain of course!" But that tells me next to nothing at all; that's saying the earth is in the universe but nothing about where the earth came from or how the earth works. Thoughts appear to emerge spontaneously from nowhere within “my brain”.

Why can't I know where and how my thoughts emerge? Thoughts are created by a process; like music, they emerge from nothing, exist for a while and then fade to nothing. Within this process thoughts are incessantly effects (i.e. a sound) created by some cause (i.e. a musical instrument). Therefore, if we try to think about the cause of thought, the thought itself is an effect of that causal process and as such cannot access its cause (i.e. the sound cannot turn into the instrument).

Thinking is like eating a cake (effect) without knowing the ingredients and process that creates it (cause). Therefore, we live with the fundamental uncertainty of where we come from. Most people find shelter from this uncertainty in religion and find great comfort in saying, “God created me”. However, the question must follow, “but where did God come from?” God is a thought and therefore an effect and cannot be the cause of thought. Only unthinkable things can be the cause of thought.

Even in our shelter we are still uncertain. I say learn to live with this uncertainty; there are things we can never be sure about. For instance, there is no way to be certain about my future with Parkinson’s disease. The effect of the process of thinking (i.e. thoughts) cannot occupy the future because they are caused in the present. We can think about and plan for the future but this plan is still thought of in the present.

No matter what we do, we are thinking in the now; we need to be aware of this and not get dragged into the false “certainty” of the “future” or pretending to know the cause of thought.

The value of having Parkinson's disease

This may sound strange but I am grateful for having Parkinson's disease. Let me explain. I have a stammer, which can cause huge emotional turmoil and difficulties with forming an identity and a stable inner and outer emotional life. Stammering can become a blinding white light, which can blot out who you are.

When Parkinson's emerged it plunged me into darkness for a while by switching off the blinding white light of my stammer. As such it enabled my eyes to readjust and see the candle light that truly illuminates who I am.

Parkinson's taught me how to see that light; that's what I am grateful for. But you don't need to have Parkinson's to gain this insight; it was just that the light generated by my stammer was so intense that it required Parkinson's darkness for me to see the candle light.

You can turn off the blinding light by acknowledging that the presence of this light is not your fault (you are not responsible for the state in which you are born). Also, there is always something left to do in this life. Within this something there is a choice. Recognising this makes it possible to see the originator of this choice (i.e. you!) and to choose to see the candle light that reveals who you are.

A piece of cake

The waitress placed the slice of triple chocolate cake down in front of me. It looked delicious! But instead of eating it I asked the waitress, "Where's the rest of the cake? I want the whole cake!"

The waitress replied, "I don't understand sir, you have got the whole cake". I looked down at the plate and it was true, there was a whole cake in front of me!

I tried not to devour it all at once. I ate it one spoonful at a time, allowing the chocolate to wash around my mouth and dance on my taste buds. You don’t have to rush these things!

How do you know you only have a slice of cake when you may in fact have the whole cake? Why not take your time with life, savour what you've got and enjoy every moment and every mouthful? Bon appetite!

Losing and gaining trust in my body

Only an evil genius would create a disease like Parkinson’s.

This thing created by the evil genius has a genius for attacking the very foundation of me in a subtle, gradual way until I suddenly find myself invited to the worst surprise party ever: “Surprise! You have a chronic, incurable and progressive disease! Now, who wants cake?”

Only an evil genius would attack and dissolve the fundamental trust you have in your body. When you ordinarily think about doing something, for example getting a drink, you just get up and get a drink; you don’t think like a Parkinson’s sufferer has to, “How will I move my body to get up and get a drink?” You trust in the intimate relationship you have with your body; it normally doesn’t let you down. However, Parkinson’s makes the expectation that your body will respond to your instructions untrustworthy. Your body lets you down. This can be a devastating realisation and one you go into mourning over.

However, only an evil genius would allow his genius plan to have a flaw in it that can be taken advantage of (aren’t all evil genius's plans like that?). Parkinson’s only affects conscious movement so automatic functions of the body like breathing are unaffected. This is the flaw. I have a path back to my body and a way to reconnect the feeling with the action.

I go to a yoga class and Laura, my yoga teacher, said something today that really impacted me. She said, “Trust your breathing.” In yoga breathing is used to bring your focus to the body (so called proprioception). Breathing is essential for life and by focusing on it you feel the natural rhythm of your body. Therefore, being aware of that rhythm or moving with it (“breath in, breath out and lift your arms…”) will allow you to feel and inhabit the very foundation of your body. This is crucial for somebody like me who has lost trust in the conscious rhythm of my body. Your breath will always be there and you can access awareness of it at any time; therefore, you can trust this pathway to feel connected to your body. You can use this to build trust in other parts of your body.

Come to think of it, I will have some cake…

Acceptance III

I had been trailing him for years, but I could never catch up with him. I came close a few times but he always evaded my grasp.

Then, I caught a glimpse of him hurrying into a crowded train station. I quickly followed and was immediately swept along with the noisy crowd. Parkinson's symptoms were everywhere. I became distracted and lost sight of him. Then the diagnosis grabbed me and pulled me to the floor. As I was scrambling to my feet I realised I needed to see the crowd from the footbridge overhead if I was to find him. I made my way up the stairs and finally looked over the railing of the footbridge. The crowd was a seething mass of symptoms rushing here and there.

I thought if only the crowd would stand still I could see the movement of the one I was chasing, like a moving needle in a frozen haystack. Up on the footbridge I took the medication that was given to me and I slowly learnt to come to terms with my diagnosis by seeing that I remained intact within Parkinson’s; I could still be me.

I eventually noticed that the crowd of symptoms had gradually slowed down and were more subdued. Then, I spotted him rushing towards a shop. I called out to him; he stopped and slowly turned to face me. He looked confused but relieved. I recognised him and the crowd stopped. He was me; the part of me I had refused to accept for years. I hesitated then ran down the stairs…

See Acceptance I

http://dialoguewithdisability.blogspot.co.uk/2013/01/acceptance.html

See Acceptance II

http://dialoguewithdisability.blogspot.co.uk/2013/01/acceptance-ii.html

“O let me not be mad…”

Shakespeare, King Lear

When it comes, preserve me as I am. Let it not break me as it breaks my body. When it renders me without control, then let me not be mad. Let me think on beauty for beauty’s sake, leave me to explore and drag my moving body to places of such possibilities that the world comes to rejoice not grieve. Let me be bored by life as it can be for others, allow me to enjoy the butterfly that lands on my nose, the sound of laughter and let me feel the pain of others. Allow me the melting of chocolate, the wind in my hair, a touch on my hand and the warmth of sunshine on my face. Let me be absurd, let me be profound, let me be wrong. If this be madness, then we are all mad…

But let me not be absent; O that other madness…

The possibility is suddenly made possible

I was settling into my new cabin in the mountains, arranging my books neatly on shelves when I heard a distant rumbling sound. As I continued to neatly place my books in alphabetised rows, the rumbling grew into a deafening roar and suddenly I was lifted in the air and spun around by the force of the Parkinson’s avalanche that crashed into the cabin. I blacked out and the next thing I knew I awoke in an air pocket beneath the snow. My body was broken and in pain. The snow above me creaked and threatened to give way but held. Luckily, I had landed in a seated position with a torch in my hand. I switched on the torch and sent the beam of light around the walls of the air pocket. The Parkinson’s snow gleamed in the light and I stared at its oppressive whiteness. Suddenly the snow began to move towards me, devouring the space around my body. As the cold snow pressed into me my mind started to fill with Parkinson’s until whiteness was I could see and think about. As I let out a scream the snow filled my mouth...

…I blinked and my eyes focused on the white walls of the Doctors office. My consultant was saying something to me, “...might have Parkinson’s, you are showing all the signs of having the disease but we need to do some tests…”

His voice turned into a distant rumbling sound as I sat defenceless in my cabin again…

Parkinson’s can also be a painkiller

Being diagnosed with Parkinson’s is like sitting down and eating a big plate of pain. It has a grainy texture that sticks to your teeth and a sour, rotten taste that sometimes makes you vomit on yourself. The pain lays heavy like concrete on your stomach and the emotional wind that erupts from you is constant and powerful.

However, the human body (which crucially includes a mind) is remarkably adaptable and can extract the beneficial from anything. For me, within my Parkinson’s is also a painkiller because it makes me confront all aspects of myself (including my stammer and depression). Parkinson’s has taught me to appreciate the deep well of determination (some might say stubbornness!) I’ve got, helped me see the benefit of having a stammer and depression (also being chronic and incurable they taught me how to cope with Parkinson’s) and how much I want to be me within my disease. I see the value of the process of living a life and dealing with change since my diagnosis. After years of pushing myself away because of my stammer, I simply want to be me now; that includes Parkinson’s but also includes my intelligence and my heart.

Parkinson’s has given me the pain but it has also given me a new perspective and a new means to appreciate and deal with life.