Honesty

You mustn't be yourself, they say. You must follow our path, for it is the right one. They lie. You must avoid yourself and consume as we do, for it is good. Hide from yourself and be thankful for the hiding places we provide, they declare. Meaning is meaningful only with us. We will take your responsibility and answer for you, they answer. Emptiness is fullness at our table, they disassembling say...but, I reply, my heart remains hungry for something more.

Verily quoth I, the meaning of the world and those in it is equally unsubstantiated, untestable and meaningless as the perception of it. Authority is inconsequential pageant for, quoth I, all equally afear the dark of an indifferent world and their unjustifiable position in it. They all cry, "what is left?" 

I say unto you, "Honesty".

Take off the masks we wear, take back responsibility, learn to be yourself in all you are, learn to make mistakes because in their meaninglessness we can make of them as we wish. Does the burden of the childhood question "why?" scare you? Good, be scared! They scoff and laugh, "You don't know that?!" I say, "I'm glad I don't know your answer!" To pretend to know is to deceive yourself and close off your nature. Learn to say, "I don't know ". Question everything because there is no absolute reason we can wrap around our curse of consciousness to give us comfort. Your answer and your comfort is equally as made up as mine. We are in this together, not separately.

Question everything! There is no more honest way to be than with "I don't know". Only then can we know ourselves!

What makes the possible actual?

There are endless possibilities but seemingly only one actual world that we can experience. Where are these possibilities if not in the actuality of the world? What makes the possible actual?

It is only with hindsight that we can truly know whether a possibility can be made into an actuality in the world. Therefore, an observer is needed to verify at this moment if a possibility has occurred and become actual. However, human observers are limited in that we think one thought after another and are therefore stuck in the present; the future is unknown to us. We can predict what might happen in the future by assuming what happened in the past will continue to occur in the future. But the further we try to leap from the present the more unlikely we will be able to predict what actually will happen. This is because of the vast number of variables in the world, including the free will of others. If we avoid the present, we are left with only a world of possibilities.

As observers we are the ones who introduce possibility into the world; we create it to enable us to navigate a path through our complicated world. But the world is a series of actualities and takes little notice of our possibilities even when we try to impose our free will onto the world (unexpected things happen and unexpected consequences of our actions can occur). In other words, possibilities are only predictions located in our heads as actual thoughts; the world is not a possibility, it can only be actual. Thought seems to detach us from the immediate sensory input we are receiving and in its place enable us to sense possibilities; we do this by taking all we have learnt, chopping it up into its component parts and being free to glue these parts back together in any configuration. For example, the idea of "seal sister" isn't actual (I don't have a seal for a sister) but its component parts ("seal" and "sister") are things in the world I know about. We become lost in the thick forest of these sorts of possibilities.

We can manipulate the world to make things like computers and phones but we can't change the laws that govern such things; we can only discover them. The discovery can be made actual. Similarly, we can live a life but we can't choose the state in which we exist; it is only a possibility glued together from the component thoughts "we create things", "I was created" therefore "I created + myself". Thoughts only influence other thoughts within ourselves. Thought can influence something outside of yourself if it is translated into action. However, in this translation process the possibility is reduced down to an actuality of the world.

Therefore, living with Parkinson's requires me to focus on the actuality of the disease and not get lost in the possibilities, which are just thoughts with limited influence. Using the actual as the basis of my response I have more chance of successfully changing the context of the disease to cope better with it. For example, I can stubbornly ignore the presence of Parkinson's in my life but this makes the symptoms worse because I am not adapting to them.

One crucial aspect of thought that is supremely beneficial in dealing with difficulty is the privileged access we have to our thoughts. We have the ability to think different thoughts, which can trigger many different trains of thought. For example, when I was diagnosed I could have thought, "My life is over" and closed myself down. Instead, I thought, "There is space for me in my disease", which opened up thought and the world again.

We cannot change the fundamental actuality of the world but we can think and act to achieve a closer, more beneficial relationship with it. 

The richest person in the world

Material wealth is immaterial to the true value of the state of your existence. In a world devoid of internal justice the worth you place on yourself is not determined by how much of the world you own nor is it the power you have over other people. These are fabricated social constructs; diamonds are just another form of carbon, gold is just another metal, political power is illusionary, heaven is just a noble lie to protect the lie of a just world.

According to the World Health Organization (WHO) 57 million people died in 2008. Assuming that figure is typical, it means that today around 160,000 people will die worldwide. The certainty of our own death one day means that we only ever lease our material wealth.

Therefore, what do we truly lose when we die? We lose the ability to do one more thing. No matter if the next thing you do is to buy a diamond ring or buy an onion ring what is valuable is the act of doing. So, when you are opening your gifts today appreciate the contents of the gift and the loving thought behind it; also appreciate the ability to open a gift. Don't take that for granted. Treasure the gift of doing one more thing! It makes you the richest person in the world!

Fade out and Fade in again

It is a particular feature of Parkinson’s disease and the medication (Levadopa) I am taking that my symptoms initially ease when I have a tablet but about three hours later my Parkinson's suddenly comes roaring up to me like a vicious dog. I shrink back from my body as my Parkinson’s, with bared teeth, takes over. I feel as if I fade out into what is called an “off” period: the boost in the levels of dopamine supplied by the medication is used up my body. As a result the levels of dopamine I naturally generate isn’t enough to control my movement and that’s when I freeze up. It's as if I am walking against a very strong wind. I literally have to fight control of my body back from Parkinson’s. When I take a tablet again I slowly fade in and can take relative control of my body again. The strong wind goes away.

The oscillation between “off” periods and “on” periods has become worse in the past few weeks. Before I would go down a gradual decline into an “off” period. Now, at the end of a dose I am literally falling off the cliff of the “on” period into the freezer of an “off” period.

At the moment my life consists of fade out…fade in…fade out…fade in…fade out… Try dancing to that rhythm!

An emotional hand grenade with the pin pulled out

I’ve had to deal with the aftermath of three major emotional explosions in my life. All three involved a period of deep mourning for the loss of who I perceived I was and eventual reconciliation with myself. It turns out the explosions took away a perception I had of myself that wasn’t really part of me; like a sculptor who creates by chipping the marble away.

The first explosion occurred when I was 16 and in the final year of secondary school. I had been going to speech therapy throughout my childhood in the hope I would get rid of my stammer. I had unwavering faith in this. I had to get rid of my stammer so I could cope with being an adult, or so I thought. I constantly asked myself, "How could anyone function as a grown up with a severe stammer?" Also, I heard that it was easier for a child to get rid of their stammer and much harder for an adult. Therefore, I had to catch the last boat to Fluent-ville and I was already running late.

I attended speech therapy as usual one day when my speech therapist handed me an emotional hand grenade with the pin pulled out. She told me "I am going to pass you on to a therapist who deals with adults who stammer".

I thought, "Sorry, what did you just say?" I said, "Sssssssssssssss..." and stammered, both verbally and emotionally.

And that's when the hand grenade went off. I was dragged into adulthood before my time and in the process lost hope and lost my perceived fluent future. I simply wasn't ready to be called an adult nor was I ready for the realization that I would have to live the rest of my life with a stammer. I felt I had failed myself in the worst possible way. I had failed to give myself the means to be myself.

I saw myself as horribly disfigured from that explosion and the ringing in my ears deafened me to my voice for years. It took 12 years of emotional turmoil to come to terms with being an “adult who stammers”.

The second hand grenade I had to deal with was my depression and nervous breakdown. The explosion blow away my flesh so I was just a skeleton; it drove away everything except my bare bones. I had to layer each muscle back onto my skeleton and repair each nerve fibre and tendon. I had to rebuild my emotional wellbeing one cell at a time. It took two years.

The third hand grenade that was handed to me was Parkinson’s disease, “You might have Parkinson’s disease”, my disease said and dangled the pin from the hand grenade in front of me. The wait was agonising to find out whether the hand grenade would explode or not. It eventually did and separated my mind from my body and catapulted me into the clutches of a prognosis which tries to dictate to me, “you will be severely disabled”. I’ve been trying to glue my mind and my body back together ever since.

Ultimately, the three explosions have enabled me to know how determined and resilient I can be in my life. The aftermath has helped me to refine how I see myself and become a lot more realistic about who I am. I’ve learnt to be alongside the problems I have. Each explosion taught me something new and gave me the opportunity to learn and challenge my perception of who I am. I’ve slowly emerged from the marble…

Fragile suspension

After years of driving on rough ground with three heavy passengers riding in the backseat (stammering, depression and Parkinson's) my suspension has started to wear out. Whenever I am in a pressurised situation my problems put on weight and become prominent, causing the weakened suspension to buckle; therefore making the journey more uncomfortable and the car likely to break down.

Recently my speech and depression has suffered with the burden of worsening Parkinson's symptoms. Why does Parkinsons have to attack such a weak spot as my stammer and depression?

I have spent quite a bit of time in the cognitive behavioural therapy garage getting my suspension repaired. I’ve been using the tools I’ve learnt to carry out the repair; the idea of thrownness (I am blameless for my problems but I can do something about them by reacting to them); my future is unwritten; I’m savouring the slice of cake I have (stop asking for the rest of the cake, you have got the whole cake!).

I am sat in the garage taking a break from the repairs, drinking powdery hot chocolate from the drinks machine they always have in the reception. I look towards my body on the car ramp and I think, “We’ve been through a lot together! Hang on in there and I’ll try to repair you to get you going again!”

Where am I?

I get off the train and I don't know where I am. I am nowhere...

I get off the train again but this time I am now here... I am where I've arrived (no matter how I got here) and I am here right now

The suffering of a Parkinson’s sufferer

Parkinson's disease is a slow violation of your life; an inexplicable, unstoppable, defining yet indefinite disintegration of everything you have built in your life. The suffering comes from the awareness of the violation and the lack of power to intervene. It comes from the burden of "should have done more in the past" and what I can't do now and in the future. It is knowing when the violation is over there will be nothing left of me. A life in ruins. 

Yet I can admire a ruined building and what a life leaves behind. That is my aim now: to live a life in the present to the best of my ability and ensure through the process of living something of me remains.

Hold on tight to our Shiny Red Balloon

I

We all tightly grasp,
The string we attach,
To our shiny red balloon

The red skin is stretched,
Over dark flesh and bone,
We are that red balloon

We mustn't let go,
Before we can know,
Whether we will go pop

We keep ourselves close,
For fear of that stop,
But instead we must let go

It is only then,
Can we possibly know,
Of new fields we can sow

II

It is with Parkinson's lead,
That we float to the floor,

But we must trust,
We are more than our rust,

We can only be free,
If we float in the air,

So enjoy the view,
From high in the sky,

Because...

Control melts like purest snow,
When we grasp it so

Resisting fear

One of the hardest things to come to terms with when you are diagnosed with a progressive disease is fear of the future. It can plague your every move and throw you into the future while you miss the present. 

Fear is useful when you are faced with an immediate threat; it focuses your attention and prepares you to fight or flight; it is a mechanism for self preservation. However, with the evolution of self awareness and imagination fear began to turn inward and prepare us physiologically to fight or flight from the idea of fearful things; we react to fearful ideas perpetually because we cannot take flight from the idea of fear (we are tied to our self-awareness of the fear) and fighting it is fighting our self.

Fear doesn't change the nature of the external object we are fearful of; fear is just a thought and thoughts have a limited sphere of influence. This is even more applicable to abstract objects of thought. For example, fear of a Parkinson's future is fear of nothing actual except thought itself since the future is not real yet (and thoughts do not create the future).

A way out of this fear of nothing is to acknowledge thoughts can be replaced by other thoughts; the idea of fear can be challenged by other ideas. We have an extraordinary ability to create thoughts and this gives us immense power in understanding and dealing with the external world and the world of thought. We can carry out a similar analysis to the one I did just now: the idea of fear is fearful about nothing except itself and elicits a perpetual physiological response normally reserved for the instant of being threatened by things in the external world.Thoughts change and with it the idea of fear can change.

We can choose to live in a world of fear, which is really a world in our imagination or use thought to limit fear to the immediate experience of external objects that threaten and resist carrying fear beyond the object to objects of thought.

Opening your Christmas gifts with Parkinson's hands

The excitement bursts all around you like the sun moving from behind a cloud. It is Christmas morning and a pile of presents, wrapped in shiny multicoloured paper, is before you. Santa's been! You kneel down and pick up the first present...but that's when the problems start. Your tremor starts again and it is difficult to move your rigid fingers. You try to hold the present in your left hand and tear at a loose bit of wrapping paper with your right hand but every part of you moves so slowly (except the tremor; such is the dichotomy of Parkinson's!) that you eventually drop the present. "I'll try another one, it might be easier". But the same thing happens; the present, unopened, drops on the floor. As you try to open more gifts the pile of untouched presents diminishes and the attempted but unopened pile of gifts increases.

This isn't just on Christmas morning, it is every morning. Living with a disability is easier if the gifts of life are not gift wrapped (which sometimes removes the excitement of the discovery) but at least life is made user-friendly by adapting the way you live to your difficulties. That doesn't mean becoming your disability and not approaching the gifts of life; it means making the gifts more accessible to you.

Merry Everyday Everyone!

Losing and gaining hope

Losing hope is caused by not being able to see the possibility of your free will influencing the outcome of an event. In our random, unjust world it is a constant battle (mostly filled in by religion and science) to maintain your hope. All hope is based on the basic premise that one day we will fully understand the world and be able to be the cause of its effect on us. In the absence of hope we sink down to our knees and let the howling winds of the world shake us out of ourselves.

Therefore, we lose the connection between ourselves and the world when we lose hope. Like the arrival of Parkinson’s in your life, you see the future you expected to have being snatched away. How do we gain our hope back?

We do not lose our free will when we lose hope; we lose the perception of what our free will can do. Therefore, even when we lose hope we are free to choose our reaction to the world and in doing so colour the world according to our will. For example, losing hope I will ever share my life with someone because of my Parkinson's causes me to perceive every woman I meet as automatically not interested in me. This causes me to lose even more hope and makes me determined to give up any possibility I have to express my heart. The world continues with its perceived indifference towards me because I don’t engage with it. I need to see the possibility of the world accommodating me and allowing me to express myself within it. If, with renewed hope in the efficacy of my free will, I can create space for me it means I can create space for others to join me.

Retreat

Imagine Michelangelo’s disappointment if he stood back to admire his David and all the dust and chipped marble that he laboriously removed over months slowly began to reattach to the sculpture. David was gradually becoming covered up and drowned in the discarded marble.

Would Michelangelo give up art if he then saw his Sistine chapel fresco brush stroke by brush stroke go back to an ordinary ceiling?

This is what it feels like to see the gains you have achieved in managing your Parkinson’s symptoms be pushed back. My symptoms have worsened recently and I have retreated from where I was.

But, I won’t give up trying to sculpt or paint my life…

Walking through open doors

Coping means approaching, confronting and moving through the open doors of a disease.

It is very difficult to see beyond the room you occupy with your disease. It can confine you and define what you can do and who you are. It can appear you have no options, nowhere to go and nothing to do except remain where you are.

However, there is always something left to do in this life; there is always at least one door in the room you are in.

If you ignore the door or hesitate on the approach you will be in denial and remain in the dark of the disease. Learning to accept the disease but seeing it as your only possibility means you stop in the doorway without going through. However, accepting it as part of you but not the whole of you means switching on the light in the next room, seeing space in there for you and then moving through the open door.

Unlocking doors

Coping with life is trying to unlock and lock the doors around you. We find ourselves in a world full of choices and there are many doors we can open and close. Each door leads to a room we can inhabit and each room contains doors that lead on to other rooms.

No matter what type of room you find yourself in there's always at least one door waiting for you to unlock and walk through. You also have a choice to lock the door behind you either emotionally or within your memory; indeed you have a choice to keep it open. However, you can never go back to the same room; the context always changes since you were there last. Where do we get the keys to unlock these doors? We are thrown into the world with a specific set of keys but we can learn to adapt and mould keys to fit other locks.

We tend not to notice the doors in the rooms we inhabit, we are creatures of habit and tend to stay emotionally where we are or follow the route we have used before. This is understandable given the multitude of doors available and the incessant choices there are to make. It is this bewildering openness, which can close you down, that makes life so complicated. But this openness gives you the opportunity, when doors are locked due to disease or circumstance, to find alternative routes to live your life.

Now, go and open some doors!

“Jonny in the blind...”

Based on the movie "Gravity"

The majestic earth was spinning on its axis beside me; the sun reflected off the polar ice caps and a storm swirled over the Atlantic ocean. I was in orbit trying to finish work on my doctoral thesis satellite; I was ready to push the satellite into the intellectual firmament when a warning came on the radio. It said, "you might have Parkinson's disease". I scrambled to get back to the life I had known but it was impossible. Then it came, the debris from a Parkinson's diagnosis; it slammed into and destroyed the shuttle that would have taken me back to my former life. I was sent spinning off into space. I felt disorientated, confused and desperately lost; “this is Jonny in the blind, do you copy…?”

The support I received from my family and friends and my doctors give me a jet pack with enough fuel to get to the nearest space station. Once I got there I readied the escape module but another wave of debris hit as my symptoms worsened, damaging the module. There was no other choice but to use the module, I had to reach the next treatment space station and I just made it. Here I am, waiting for the next wave of Parkinson's debris to hit, longing for something to get me back to earth...

Being in love with a Parkinson’s sufferer????

Parkinson’s disease changes you physically; it drives its car in such a way as to continually cut you up on the motorway of your life; it causes traffic jams, accidents and under takes you while you are sat behind the wheel of your car impotent with road rage: “get the f**k out of my way!!”

This must be the same for partners, family and friends who are driving with you; the scream out of their own car windows, “we are trying to get somewhere Parkinson’s, get the f**k out of our way!!”

This is especially true when you are trying to start a relationship (in my case) or maintain a relationship. Your partner (who has potentially known you for years) or potential partner (who has expectations of what they want in a partner) will expect you to drive at a certain speed and with a certain level of skill. As they are wanting to race ahead with you, you are stuck behind the Sunday driver that is Parkinson’s. Eventually you drift apart (or never drift together) and lose sight of each other.

I think we respond to love and being wanted both emotionally and physically; we can normally reciprocate love in the same way. Because Parkinson's undermines us physically and emotionally however and at the same time increases the need to be loved (especially somebody to love our crumbling physical body) it reduces this response and reciprocation to dreadful isolation; the disease stops the normal cycle of being in love: you engage emotionally with someone, they reciprocate, then you engage physically which lays new ground for a deeper emotional connection (in an ideal world). Parkinson's dissolves this possibility both for you and your partner.

Parkinson’s makes you and your (potential) partner drive at different speeds…

Living in an unjust world

“Alone! I’m alone! I’m a lonely, insignificant speck on a has-been planet orbiting a cold, indifferent sun!”

Homer Simpson

It is a comforting fiction that asserts we live in a world with a kindly paternal overseer, like the ultimate alpha male looking after his chimp group. The incidence of natural injustice such as children having Parkinson's disease or a million other examples demonstrates we live in a world without any internal justice. This is why searching for an answer to "why me" questions is so fruitless; there is no entity in the world to provide any answers to these questions.

It may be uncomfortable to acknowledge that we truly are alone in this world but it is a valuable insight into the world. Of course this lays a terrible burden of responsibility on our shoulders; in an indifferent world we have to justify our own actions and define justice and injustice ourselves. For some this is too much to bear and they retreat into the fiction again.

For me, as a Parkinson's sufferer, I prefer the liberation of not trying to understand an entity that isn't there. It dissipates the rage and the self-flagellation. If there is no natural justice then I can understand my disease in any way I wish. I can build my own sense of justice and injustice; I don’t have to subscribe to the paternal overseer story and its contradiction of an all powerful creator who is powerless to stop suffering; of a just creator who is unjust; the ultimate moral good who isn’t morally good. As the German philosopher Immanuel Kant said, we assume the ultimate moral good (i.e. the paternal overseer is our assumption) but we have a choice to question the validity of the assumption; we don’t have to believe in the religious interpretation of where the moral good comes from to be a good person. We can choose to understand the relative nature of morality while still remaining morally good. We can choose the responsibility of being the justification of what is just in our world; we do this anyway when we choose a religious morality.

This choice creates space within the world for me; a chance to exercise my free will and take on the responsibility of choice, which enables me to choose to live alongside my disease.

A sense of justice is not internal to the world; we create it to heat up the cold indifference of the world.

The reasons why

We are obsessed with understanding why things happen; Science tries to find out why the world acts the way it does, it is the basis of religion too. Our curious nature is the wonder of the universe but it is also a terrible burden; it can lead us to seek answers where there are none.

Why do bad things happen in the world? Why do I have Parkinson’s disease? There is no reason. It just is. Our need to answer the question is a need for control in a hostile world. If we can understand why we can prevent it and make the world and ourselves safer. But sometimes the world cannot offer any answers and this leads us into logical despair; we end up praying to God who, as author of the world, is responsible for (or at least neglectful of) the evil in the world. So, we end up replacing “why is there evil in the world” with “why does God allow it” and get absolutely nowhere in answering the why.

Some people blame themselves for being “born into sin”. But such reasoning is a cry of despair. In no way did we choose to be born or choose the way we exist. What have I got to do with what supposedly happened 2000 years ago? That’s not my responsibility; that’s like saying I committed murder ten years before I was born and I should be punished for it.

We should learn to live with uncertainty and not knowing why. It just is. We can learn to do something about it by trying to understanding how the world works but filling our lives trying to understand why is trying to climb through the looking glass; instead we bang our heads and we are left looking at our reflection and wondering, “why am I here?” No reason…

“I'm going to be severely disabled...”

Parkinson’s is a chronic, incurable, progressive disease. How would you feel if you faced the prospect of severe disability in the future?

Would it scare you? Would it make you sad? Would it make you give up? Or does it make you try to live up to the opportunities life can still give you?

Would you end up obsessed about the future? Would you hesitate and feel an overwhelming burden to achieve everything now while you can? Or does it make you celebrate who you are in this instant?

Would it make you look back and regret the opportunities missed? Would you feel the anxiety of the march from independence to dependency? Or does it make you celebrate what you were able to do in the past and what you are still able to do?

Would you feel isolated at the prospect of being within a body that is unresponsive to you? Or does it make you try to live your life to the best of your ability?

Would you give up hope of finding someone to share your life with? Would you devalue yourself in the face of such a prospect? Or does it make you see yourself as preserved within the disease and still capable of being a loving person?

Would it make you rage against the unfairness of it all? Would it devalue your mind as your body is stolen away? Would it disappoint you that your mind isn't strong enough to overcome Parkinson's? Or does it make you appreciate the power and privilege of thinking as the tool to sculpt Parkinson's into a life with space for you?

Dare to ask yourself these questions and understand what chronic, incurable and progressive means. By the very act of formulating the question, understand the choice you have in such a disease…