Something in the river by the dream

The river has become stale and green algae has covered its placid surface. I am underneath the water struggling to break the suffocating layer of algae and take in a lung full of air. I see through the green haze someone on the river bank. He is me without the burden my body and my mind carries, with his hope intact and a safe life surrounding him. He strides away and leaves space for a new dream...

Parkinson's disease: the ham sandwich that wants his cheque

My body orders itself from the menu at the Parkinson's cafe, greedily devours itself and then pays the bill for what it eats.

Parkinson's is the process of my body defeating itself and I'm paying the price. The cause of the disease means, although I am not to blame for the loss of nerve cells, they are my nerve cells I'm losing; something that gives me control of my body is slowly controlling me, which means I can't leave the Parkinson's cafe and I can't stop eating...

Choice without a choice

"And the Oscar goes to..."

The prognosis of Parkinson's presents you with a dilemma: go and collect your Oscar but on the way up the stairs you will trip over again and again so you end up never reaching the podium. Or stay in your seat and watch the chance of winning an Oscar fade over time.

Treatment for Parkinson's, with all its side-effects, is seeing the hope of one day reaching the podium and reclaiming your life back; while at the same time watching your body inevitably get further from your grasp. One half of the coin makes you aware of the other half. The memories of better movement and the gap between then and now makes treatment a choice without a choice. You want to live with the opportunities the Oscar brings so you keep on trying to climb those stairs...

“Pineapple china”

Lyric by Robert Pollard, musical genius, Guided by Voices

I sit down in the comfy armchair and sink into its embrace. “Would you like a cup of tea?” I reply, “Yes please, milk, no sugar, I’m sweet enough!” I look around me and notice the flower wallpaper, the TV in the corner, the coffee table in front of me. It looks like a typical living room. But something isn’t right here; the TV is playing a movie in fast forward and I notice with lurching surprise I’m starring in the movie; I then become aware of thousands of cups pinned to the walls, like animal heads mounted as trophies; the wallpaper is filled with lilies and carnations. The doctor arrives with the tea but strangely the cup is made of stacked pineapple rings and the tea is leaking everywhere. I try to see the name on the doctor’s name badge and then my heart breaks: it reads, “Parkinson’s…”

Filling the silence

Parkinson’s is a deafening silence in your life; an open drain; a gap and a void. You can allow the silence and the void to grow or you can fill it with beautiful coping music.

It is the nature of music that each note is created from nothing, exists for a time and is enveloped by the nothingness of silence again. Therefore, coping with Parkinson’s is a process of continual renewal; of creating music to resist the silence and watching one sound fade only to create again…and again…and again... This is the burden of chronic disease.

The power of words

POLONIUS: What do you read my lord?

HAMLET: Words, words, words...

Ludwig Wittgenstein said that thoughts are “logical pictures” of what happens in the world. Thoughts are projected or shared using “propositions” and propositions make up language. He then claimed that the logic of language and the use of words provide the scaffold on which we construct our world; it follows that the limit of language is the limit of the world.

The world is a wonderfully complex, profound, mundane, magical, exhilarating, tragic, funny place. If we believe Wittgenstein, it is the power of words that create our world. Just pause and consider that; the words we use in everyday thought and conversation have the power to create the "Universe" as we know it. Words limit the experiences we can report to ourselves and others and therefore knowledge, which is based on reporting what we experience of the world, is created by words and limited by the use of words.

Words are immensely powerful and such power is readily available to us all; we can change our world by changing the words we use. For example, when my Parkinson’s diagnosis came and knocked me down I could of said, “My life is over now, I can’t do anything and I’m disabled and useless”. Using such words creates a world in which you are useless and disabled and can’t do anything. Words set the limit to your world. However, when I was diagnosed I was determined not to succumb to the disease and I've tried to live alongside it; this is the world I live in because I created it using specific words.

Of course words can’t change the state in which we exist (i.e. our thrownness which can include susceptibility to Parkinson’s) but they are crucial in determining our reaction to the world and our thrownness within it; it is in this reaction that our "world" is created.

Ask yourself: "But why do I think that?"

My Parkinson’s tiredness will make me faint if I push myself and go out into town. This means I’m out of control and open to be flooded by Parkinson’s.

“But why do I think that?”

Tiredness is different to fainting; the causal link between them is not necessary since tiredness is a feeling and fainting is a loss of feeling. Therefore, tiredness is not an indication of losing control and the rise of Parkinson’s within me.

Thinking always has a counterpoint and an openness to allow alternative thoughts; there is one more thought to think. Negative thoughts always have a positive opposite. Negative thoughts need to be challenged; a dialogue has to be opened with yourself. Just because you think something doesn’t make it true. Ask yourself, why am I thinking this? Am I justified in believing this? Should I surrender to the thought? Why do I think that?

The cost of disability - a cautionary tale

I think I need to apologise to my body and myself because I have played out the true cost of disability: loneliness. I was thrown into the world with a stammer, depression and Parkinson’s but the presence of these things is not my fault (they weren’t even chosen for me, they just are). What is my responsibility is how I manage these things and in the past I tried to contain their effect on me (and other people) by closing myself down. At the time it seemed like a good strategy when not one, not two but three very difficult things were punching me in the face every second. My strategy was to dull the pain. But, looking back I realise my strategy introduced a fourth entity that threw punches; I see myself standing over myself joining in the beating. I was defeating myself by shutting myself away and making loneliness almost a certainty. It helped to stop the beating by seeing the thrownness of my problems; I am not to blame for their presence in my life nor am I a slave to them.

So, I’m sorry body and mind for making your (and my) isolation more likely. I built barriers around myself to keep my disabilities away but I ended up keeping away everything else; I also stopped myself from reaching over the barriers and sharing myself. I’m sorry you haven’t been wanted. I see the choice I have to change this and I’m trying to make up for lost time before Parkinson’s potentially takes the possibility away.

Disability can be defined as physical difficulty engaging with the world (I see mental ability as having a physical basis so this includes mental difficulty). Our world contains varying physical terrain we have to manoeuvre ourselves in and around. There is another terrain we have to negotiate with, that of society and the interaction between people. Disability can lead to isolation in both types of terrain. I’m not sure which is worse; having difficulty getting to a social event or once there, feeling alone in a room full of people. Help should be given to battle both types of terrain isolation.

Shadow boxing

Can something please be easy in my life? Every scrap of paper in my scrapbook has to be scrapped over. Why do I have to shadow box every little atom of my life? Why do I have to fight so hard for everything? Can’t you see how bruised and bloody I am? How weary my burning limbs are? How many teeth I’ve lost? How my eyes are swollen shut?

But fight I must! Bring the worst you can conjure up! I don’t care; you’ve given me all this already, what’s another drop in the ocean? I stand resolute!

Knock me down, again and again, and I will say, “thank you for giving me the chance to stand.”

Surround me with silence, and I will say, “thank you for giving me the chance to hear.”

Give me loneliness and I will say, “thank you for giving me the chance to know myself.”

Hate me and I will say, “thank you for giving me the chance to know what love is.”

Make me poor and I will say, “thank you for giving me the chance to know true value.”

Decisive me and I will say, “thank you for giving me the chance to tell the truth.”

Call me ugly and I will say, “thank you for giving me the chance to see true beauty.”

Hurt me and I will say, “thank you for giving me the chance to heal myself.”

Ignore me and I will say, “thank you for giving me the chance to know what it is to be wanted.”

Laugh at me and I will say, “thank you for giving me the chance to know the real value of laughter.”

Bind me in your chains and I will say, “Now I know what it is to be free…”

Mental to physical and back again

She holds the violin with a graceful lightness that belies the violin's physical presence. The bow moves and her fingers press on the strings and what emerges is an expression of the emotional content of her being. Somehow her mind translates itself into the movement of her hands and arms; the violin, in its response, retains yet transforms the logic of thought into the physical presence of sound. I capture these sounds; and their physicality, in turn, plays the strings of my mind to generate thought. In essence, her mind, via these physical intermediaries, is reaching into my mind and playing it like an instrument.

In contrast, Parkinson's attacks the first step in this process, the "somehow" that translates conscious will into bodily action; its deleterious effect cascades throughout until Parkinson’s plays a song, dissonant in nature, in the other person's head unlike the one I intended. So I reach out but fail to go beyond myself.

Parkinson’s fly

A fly keeps circling above my head, going round and round until it suddenly sees the outside world beyond the glass of the window, and with reckless haste throws itself towards the world; of course it is oblivious to the glass and protests with a loud buzzing sound as it crashes into the unexpected solidity of transparency. Surprisingly, it resumes its circular flight path and launches itself against the glass…again and again.

Parkinson’s is like the glass of the window and I am the fly; engaging with Parkinson’s with anger or frustration or disappointment means crashing into the glass over and over again. I need to recognise the solidity of the glass and fly alongside it; or better still look around me and explore all the possibilities of the room and the house I find myself in.

State of Independence

If you rummage around your life, opening the drawers and lifting the cushions you will find swipe cards everywhere. They give you access to everything in your life; the many doors you go through; the friendships you have; the abilities you cherish; the places you go. The swipe of those cards gives you independence.

The problem with Parkinson’s is that it begins to cancel the swipe cards you have scattered around your life so when you come to use them access is denied. This is the frustration of the disease. However, you may have an old fashioned key to open some doors or by accepting help other people will use their compatible swipe cards to let you in.

Certain doors will be closed to you but keeping hold of your curiosity and continuing to explore your life, you may find new swipe cards and new doors you never knew existed.

From flesh to rigid stone

Parkinson's disease is a snake bite; venom is radiating from the initial wound and is inexplicably seeping into me. Its poison obliterates all it touches; exchanging flesh for rigid, cold stone. Silent pain sets my face in unalterable anguish as the snake wraps its body around mine. It bites again and again; those around me try, in vain, to drag the creature off me. I finally surrender to the stone and there I remain, locked in the perpetual embrace of Parkinson's.

Mental health prejudice

We are made up of a mind and body. In comparison to the body, which has recognisable unconscious elements (e.g. we don’t control our heart beat) the mind is seen as conscious and therefore closer to the centre of who we are; control, moral agency and personal responsibility are seen to emanate from this conscious centre (after all we can create thoughts, can’t we?). In this view, the body is more peripheral and is something carrying less personal responsibility. Therefore, when the mind is ill, prejudice sees it as a failure of conscious control and the sufferer is somehow to blame. Illnesses of the mind are seen as having internal, personal causes. In contrast, when the body is ill the illness feels like it is imposed on us by an external cause and is fought by mechanisms of the body outside of conscious control.

This prejudice is flawed. It fails to acknowledge that the mind also has unconscious elements outside of direct control. For example, a susceptibility to depression is part of the structure and function of the brain. This is part of our thrownness (the state in which we exist) and thrownness is blameless (in the same way we didn’t choose whether we were male of female).

Despite having no choice over the fact of mental illness, we are not helpless: we can choose our reaction to it in the same way we choose to put a plaster cast on a broken leg to help it heal.

Depression Missile Crisis

It comes through on the wire; depression has installed its most advanced weapons on an island close to your shore. An emergency meeting is called and the atmosphere is thick with fear and confusion. Options are thrown on the table; engage the enemy and bomb the island but that risks escalating the situation; the threat is also not contained by doing nothing and assuming the situation will resolve itself; someone even said bomb ourselves…Nothing is decided.

As more and more bombs are delivered to the island and readied for launch a series of provocative military manoeuvres takes place. Tension increases as a few skirmishes break out. Direct communication with the island closes down. Missile launch is imminent.

You sit in your oval office, thinking about the depressive missiles over and over again. You feel trapped. What am I to do? Then, with courage and determination you call somebody into the oval office. You say with a trembling voice, “I think I might be depressed”. The person replies, “OK, don’t worry we will sort it together! We need to open up a dialogue with the island. The missiles don’t have to be there forever. Now you’ve told me, we’ll sort it out…”

Prejudice

Analogy: Nature dresses a child and we blame the child for wearing the clothes. 

We did not choose our skin colour, gender, facial characteristics etc. We were thrown into the world with these decisions already made for us and before we had the ability to choose anything. 

Why are we judged as if we did choose those things? Why are you judging me for the cut of my birth day suit?

What is lost in Parkinson’s?

The presence of Parkinson’s in your life certainly feels like a loss, a devaluing and something to mourn. But does it cause a passing away of yourself? What exactly do you lose when you are diagnosed?

Past achievements remain intact and retain their value despite the presence of Parkinson’s in your life; you may long for the relative freedom from the disease you had in the past but this just shows the value that your past still has for you; it can be a source of inspiration and not disappointment.

The future does not exist in the present: it is unwritten and largely unknown, it is made of mostly inaccurate predictions; did you predict Parkinson’s? Case closed! The future is unpredictable because we don’t know everything about the world or its causal relationships; also people have free will and can change the world. The future is merely fragile expectations…

The present feels like Parkinson’s is taking bites out of me, ripping chunks of flesh from my body and gleefully devouring me piece by piece. However, this makes an assumption: there exists a perfect version of me unaffected by Parkinson’s that I can compare myself to. It is equally questionable to compare yourself to other people. Other people are not you. The only reasonable comparison I can make is with myself at this moment; this reveals, at this precise moment, I am being myself.

So what is lost? The past retains its value, the future is still unwritten and in the present you are just being you. The thing that is lost is your expectations of your present and future and this is truly devastating. But expectations can change…

Universal aspects of Parkinson’s

As you grow older you gradually find you have shed your former skin and left behind what once you found easy; the pool of energy at your disposal shrinks; your body changes and creaks like an old floor board. Gradually, and sometimes imperceptively, you adapt and come to terms with your changing self. This process of growing old takes decades and is universal to all…

Parkinson’s speeds up this process and dumps on you in one moment all of the issues, emotions and difficulties of aging that usually take decades to play out and gradually resolve. In a sense most are succumbing to the issues surrounding Parkinson’s in slow motion. Unfortunately, for some the fast forward button has been pressed.

Do I disappear?

Since my diagnosis I have viewed the world and my body through the distortion of Parkinson’s glasses; everything I see is in relation to the list of Parkinson’s symptoms. Movement is already assumed to be slow movement, tiredness is Parkinson’s tiredness, tremor is always there, my future is fixed etc. I have become abnormal.

Does the view through the glasses tell the whole truth of me? If I remove my Parkinson’s glasses do I disappear? Before my diagnosis and the installation of my new point of view I was suffering from Parkinson’s but I was still able to be me. My diagnosis changed nothing except putting on my Parkinson’s glasses; my symptoms did not get worse. There is something left of me when I take off my glasses and see myself from a different angle; Parkinson’s is not the whole of me.

I am a normal person dealing with abnormal circumstances…

"Stay with the clouds as they scatter..."

Lyric by Robert Pollard, musical genius, Guided by Voices

The dark clouds of Parkinson's gather slowly but inevitably and for many years go unnoticed. Once they are seen the Parkinson's clouds reach down and lift you from familiar ground; in doing so you are stretched transparently thin across the sky and become attached to the underside of the dark clouds. Helpless, you hang there and watch from a distance as life continues on firm ground. When the sun comes out for those on the ground, you are scattered along with the clouds and miss the sunshine.

As Parkinson's develops the scattered parts of you are reformed into different cloud formations; this process of scattering and reforming is continuous.

Evolving full stops

After 4 billion years of Evolution, we humans (along with all current living things) are state of the art in living technology, as crafted by Natural Selection. We inhabit an astonishingly complicated and beautiful state of existence.

Evolution has shuffled the genetic deck of cards and thrown us into the world to inhabit a little patch of existence. This patch is grounded in the structure of our bodies; the specificity of our anatomy determines the area and limit of the patch of existence we inhabit. The specific dimensions of human existence were determined by the genes we were thrown into the world with, which built the structure we are: in such a way that the human patch of existence, although overlapping with our closet relatives the great apes (and sharing commonalities with all life), occupies a unique position in the Evolutionary landscape.

The function of the body is founded, specified and limited by the structure of the body; function cannot go beyond this structure (cannot step off the human patch of existence) but within this confined space function can build upwards and create a skyscraper made out of the many layered actions of the body; all human activity is located and limited within the different rooms of the function skyscraper. As humans continue to evolve the patch of existence will change shape as the structure of the body changes, which shifts the design of the function skyscraper.

Each individual in each generation represents a full stop and a potential new sentence in the story of life. My genetic full stop includes susceptibility to Parkinson’s, which reduces the size of my patch of existence and removes some rooms in my function skyscraper: all because Parkinson’s changes a specific structure of my brain. However, Parkinson’s doesn’t destroy my skyscraper; there are rooms for me to inhabit.

Allow the past to pass

For years I kept 350 unread emails scattered around my inbox as a reminder of things missed in the passing, opportunities unexplored and the past as unresolved. It was a strange comfort that I hadn’t drained the past of possibilities and therefore if I controlled the past in this way the present and future were also in my control.

However, there comes a time when the past should be allowed to pass to make the present as present as possible; so I went through my email inbox selecting the unread emails but not reading them and clicking “read all” to get rid of the notification. Now the only unread email I have is the one I receive just now.

A permanent hair in my mouth

Every day that I wake up with Parkinson’s I find a greasy hair in my mouth; I spend all day pulling it out of my mouth but never come to the end of the hair. The hair dangles from my mouth and when I sit down it accumulates in a big pile beside me or when I walk around it trails behind me…This is the chronic nature of Parkinson’s.

Parkinson's hole or whole?

The English language is wonderfully complex and ambiguous. For example, "hole" and "whole" sound the same but one has a fullness to it and the other an emptiness to it. Which spelling fits Parkinson's best? Is Parkinson's a hole you fall into? Is it the whole of you? Or does Parkinson’s help you fall into the whole of you?

Prior to diagnosis I had Parkinson’s; I just didn’t know it. If prior to diagnosis I could be me then after diagnosis I can still be me; nothing has changed except awareness of Parkinson’s. If you choose it, Parkinson’s can point you to the importance of living moment to moment because that is what we do anyway. We don’t live for the past or the future; we live in the moment and for actualities in all their complexities and ambiguities.

Server or served at Restaurant Parkinson's?

The restaurant dining room was magnificent; two big chandeliers hung from the ceiling and bathed the immaculately laid tables in soft light. We were shown to our table by a smartly dressed waiter and handed menus. However, before we had chosen what to eat, dishes began to turn up and quickly filled our table. There were dishes of tremor, slowness and depression among others. Dismayed, I called over the waiter, "What's this?" The waiter answered simply, "Parkinson's, sir..."

I then got up from the table and walked into the kitchen. I saw the Chef shouting at his kitchen brigade; ignoring this I stepped purposefully to an empty space along the kitchen worktop and gathered ingredients from the Parkinson's larder. I started to chop vegetables and prepare the meat for the coping and acceptance dish I wanted to cook and eat for myself.

Once completed, I carried my dish to the table and proceeded to eat it, in between reluctant mouthfuls of the Parkinson's food. In this way I avoid emotional indigestion...

Bits of me: what other people see

As I walk around the world, I sometimes catch a glimpse of my reflection in shop windows, mirrors in bathrooms etc. I see the stiff right arm and rigid fingers, my tremor, the roundhouse way I swing my right leg, my walking stick and blank facial expression; and I wonder if this is what other people see or do they notice me beneath the Parkinson’s uniform (like a person beneath a police uniform)?

I feel a vast sea of emotion inside me and swim endlessly in it but I only see raindrops of me scattered on my Parkinson's-infused reflection. How can other people see through the fog of Parkinson’s to the self-aware, emotional entity I am? 

We need to explore beneath the surface of the people we see and not judge them for our judgements; be open and react to them and not to what you expect them to be. My Parkinson’s symptoms were not of my choosing, they are symptoms of my thrownness. We are each an individual act of being thrown into the world, a process we had no control over (so why are we judged for what we are?); but, within thrownness there is choice of how we react and this is the centre of who we are.

The next time I see another person or glimpse my reflection I will try to see beyond the surface. You have that choice too…