Trusting myself

I have lived under the burden of self-doubt all my life. It’s as if I have worn multiple layers of clothes and it has made me feel stiflingly hot and deeply uncomfortable. Try to imagine not hearing your own voice and not identifying with your voice; try to imagine feeling you are not in control of your mind and feeling you are in a constant battle with yourself; imagine not connecting with your body and not feeling in control of it. These are the layers of stammering, depression and Parkinson’s self-doubt I have been consumed by. I reacted to self-doubt by trying to control everything and when I couldn’t control everything in the world I would add more layers of self-doubt clothing.

I have emerged from those layers during the past year: ironically since my diagnosis of Parkinson’s. I have recognised that those self-doubting layers of stammering, depression and Parkinson’s are just a part of my thrownness (or the state in which I exist). I focused on those things to the exclusion of almost everything else. I didn’t notice the person beneath those layers. I neglected myself in the all out warfare of proving myself and filling in the void of self-doubt.

I have emerged battered and bruised and severely dehydrated. I am only now learning to drink the cool, refreshing water of trust. Trusting my breath and my voice; trusting the stability of my emotions and my mind; trusting my mind to connect to my body; trusting the future and my ability to still do things; trusting the value of myself and my ability to be me.

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 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.

The relationship between Mind and Body in Parkinson's disease

Parkinson’s is taking away my ability to translate conscious thought into movements of my body. This has prompted me to ask: how much of me is lost when the communication between mind and body is defective? Am I my thoughts or my body? Am I lost when my body fails to respond?

Thoughts are objects in the world but they have a special status: they can signify experiences of objects in the world (e.g. the thought, “the sun is yellow” signifies an experience of the sun and not the object itself). Non-thought objects cannot signify experiences but they can be the subject of experiences. In other words, the transition from objects in themselves to an “object” in thought requires a thinker to experience and signify the object.

There is another type of signification of thought: when I think, “type this word” it signifies a complex set of muscle movements which direct my fingers to tap the keyboard; the thought “type this word” is a thought signified by consciousness as my thought and is also a signifier of bodily movement. The resulting movement is limited by the effectiveness of the thought and also the specific arrangement of bones, muscles and tendons etc in my body, whose arrangement was determined before I was born.

Therefore, thoughts can signify experiences and bodily movement; as such thoughts are free and also restricted; free to be whatever is possible as experience (within the limits of language and understanding) and restricted by the specific state of the body the thought finds itself in. My body limits the signification of thought as bodily movement but leaves intact thought as experience; this happens in both non-sufferers and sufferers of Parkinson’s, the limit is just deeper because of Parkinson’s.

Therefore, as I gradually lose control of my body I lose my identity as signifier of bodily movement but retain myself as a being who experiences the world.

Be the artist of yourself

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

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

A shared difference

We are all different yet we are all the same

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

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

The 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.

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.

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.

In orbit around my body

I used to be in a close and regular orbit around my body; like a satellite going around the Earth beaming my conscious will into the TV’s watched by my body, which is how I tell my body to move.

Parkinson’s has emerged and made my orbit irregular; sometimes the satellite is close to my body and the signal gets through but sometimes it is far away and the TV picture is intermittent and weak. Medication can boost the signal but it does nothing about the increasingly irregular orbit my mind forms around my body.

Its snowing Parkinson’s

Big snowflakes are continuing to fall from the leaden sky. They tumble in the air and gently land on whatever is in their path. Snowflake by inevitable snowflake a thick blanket of snow forms and lays heavy on everything.

You stand naked and cold within the snowstorm, knee deep in the snow. You must keep trudging along in the snow, otherwise the snowflakes will cover you completely. Snowflakes even land on your eyelashes and you blink them away. Cold weariness infects your every movement.

Parkinson’s continues to fall as if from the sky and lays heavy on everything…

Reflecting Parkinson’s

When you look through a telescope at a distant planet you are experiencing the photons of light bouncing off the planet but not the planet as it is in itself; that is shrouded in mystery. Similarly, when I look at a person I am not experiencing them as they are in themselves but only the light that is reflected off them. In other words, experience is indirect and mediated by physical phenomena (e.g. light, sound waves, stimulation of nerve cells etc) unlike the object being observed (e.g. the human body is not a photon of light). Objects in themselves can never be known because knowing requires a knower with an indirect point of view; to know things in themselves means viewing without taking up a point of view, which is impossible. Objects are always experienced as a reflection of their true nature.

What about when I look at myself and with self-awareness recognise myself? Isn’t that experiencing myself as a thing in itself? The experience of my body is still indirect and mediated by physical phenomena; for example, visual experience of myself is mediated by light. If I close my eyes I still sense my body as a possession of myself, but this is dependent on sensory input from my body; I cannot know myself without such input and the point of view constructed out of it. Therefore, self-awareness is from a specific point of view, only the sensory input is internal and external; we have privileged access to inner sensations but this is from a specific point of view (our own) and never as a thing in itself; viewing must be from a point of view. It follows that we will never fully know ourselves despite our self-awareness.

Parkinson’s is a disease with a physical manifestation that overlays conscious control with stereotypical movements (e.g. tremor, blank facial expression etc). In a sense it distorts the reflection of the person beneath the symptoms to those around them; the photons of light bounce off the person at the wrong angle. The viewer of a Parkinson’s sufferer, including the sufferer herself, has to readjust, filter out the distortion, to see a clearer reflection of the person; they are not just a reflection of the disease.

The dangers of “normal”

Society projects an idea of what is “normal”; we reach for this ideal and in the process become predictable. The meaning of the ideal of “normal” is to ensure we engage with and contribute to that particular society’s survival. As part of this projection, we are assaulted on a daily basis by the empty images of advertising and feel the pressure to conform to the society we find ourselves in. In the process we are compelled to compare ourselves to others. In the case of advertisers, the “normal” life they project is deliberately unobtainable so we buy the product to make up for the perceived inadequacy in our own lives; somehow having the product makes us “normal”. Of course, the life they project is nonsense and the fulfilment of owning the product is short lived as fashion and the definition of “normal” moves on.

This is in direct conflict with the individual, varied and unique lives we lead. Therefore, any comparison with what is “normal” is comparing like with unlike and inevitably results in disappointment with yourself; this implicit inadequacy and disappointment is the nourishment of all religions and companies.

This is a particular problem for those who fall shorter of “normal” and are deemed disabled. For example, Parkinson’s sufferers can be drawn into comparing themselves to other people (and also to their past selves) and feel the loss imposed by the disease.

However, all notions of what is “normal” are relative and partial. We are free to choose our own “normality” and who we compare ourselves to. Of course, taking on this freedom shackles us with responsibility for the choices we make. Many of us follow, without question, society’s “normality” to avoid such a burden.

On Impairment and Disability

1. Impairment

I define “impairment” as the underlying disease process that impacts a person (e.g. in Parkinson’s disease it is loss of nerve cells in the brain). The identification of a particular aberrant function of the body and attempts to eliminate or manage the disease process is the responsibility of the medical profession.

Impairment is part of what Heidegger calls the “thrownness” of the impaired person; in other words, part of the state in which that person exists, as determined by events before her birth (or before she was “thrown into the world”). Agency, defined as self-determination, arises only after we are born. It follows that thrownness, which is set up before birth, is not self-determined: meaning that the impaired person is not responsible for the impairment or indeed any aspect of thrownness. It is true, the person possesses the impairment but she is not the agent responsible for the possession (there is no agent responsible for thrownness, it just is).

Criticism of the medical profession for “pathologising” the impaired person is misplaced for two reasons; firstly, it is a form of self-denial to believe the impairment is not present; second, the pathology describes a small part of thrownness and since the impaired person isn’t responsible for their thrownness the pathologising misses the whole person and just hits upon the impairment.

2. Disability

The concept of “disability” arises from comparing the impaired person to those whom are different to her. An example will demonstrate this: we all have an impairment in that we can only see in the visual part of the light spectrum. But this isn’t called a disability because no one can see the rest of the spectrum; disability is a relative term, it needs others with a comparative ability to have any meaning.

The impairment is important here only as a means of differentiating the impaired person from those around her. But, we were all thrown into the world with varying abilities and impairments and therefore, depending on whom we are compared to, we can all be defined as disabled. Disability is a fragile and muddled concept.

The notion that disability is made by the inaccessibility of the environment is predicated on a false expectation of similarity among all people (i.e. ignoring the presence of the impairment). Environmental disability has nothing to do with the impaired person; it is due to the assumed ability of the “average” person that the urban planners catered for. It is gratifying to see during the past 30 years the definition of “average” has broadened to include varying abilities, resulting in a more open environment. However, there is no environment that can eliminate the presence of the impairment, it can only lessen its impact.

3. Conclusion

“Ability”, “disability”, “average person” are all relative terms and cannot be absolutely defined. In contrast, the “impairment” is either present or absent. Therefore, I see disability as a weaker concept in that it relies on the (usually negative) comparison with other people and misses the impact of the impairment on the impaired person. I believe it is crucial, as far as possible, to empower the affected person with knowledge, tools, adaptations, financial support and psychological help to enable, despite the impairment, a free exercise of their agency. Those of us with greater difficulty in expressing our agency should receive more help. Such social care must be for some purpose, an enabling of agency, and not an end in itself; for example, a person is helped to shower and dress in the morning but left all day to stare at a blank wall; the care has led to nothing and therefore has lesser value.

Disconnect

I was sitting on a chair in front of a full length gym mirror doing Pilates (yes, I go to a Parkinson’s Pilates class!) when I noticed something strange: my reflection was leaning to one side but I felt like I was sitting straight. When I corrected my reflection so it was straight I then felt like I was leaning to one side. It was very strange.

It seems my Parkinson’s is affecting how I sense my body; Parkinson’s is trying to shove me out of the way.

Disability and Onlyness

Tennyson wrote, "tis better to have loved and lost, than never to have loved at all". At least to lose love means you found it in the first place; you know the joy of that discovery, you've found yourself worthy of its possession, you have been the entire focus of another person and you know the feeling of returning their loving gaze.

Spare a thought for those who are closed off from love; whose life-long and now emerging disabilities have crowded out the capacity to generate such joy. This is the heaviest burden of disability: the greater potential for physical and emotional isolation and having the disability as your only daily companion. It gets in the way, causing you to trip over yourself as you set off on the journey towards someone. 

This is an important, yet mostly hidden away, part of the dialogue with disability...

Intentionality within disability

Vincent Van Gogh is one of the most famous artists in the world with a very distinctive, recognisable style. He is also one of the most famous people in history to suffer from mental health problems. Van Gogh's suffering can overshadow his artistic achievements; as if his mental problems had sole possession of his paintbrush. How much of his success in art was generated by an intentional, developing artistic program implemented by Van Gogh and how much was determined by the imposition of his mental health problems? This raises a more general question; how much conscious intent is possible within a disability?

To take Van Gogh as an example, he was a highly intelligent, open and articulate person. In the letters he wrote to his brother he describes many times his artistic intentions and the forging of his artistic voice; his paintings were not random splashes of paint, they served an artistic purpose. Therefore, even within the mental problems he had, Van Gogh could articulate and carry out an artistic program. He was able to develop a new visual language and through this language express his emotional state in his paintings; which I believe became the meaning of his art.

The efficiency and effectiveness in which he carried out his intentions was probably affected by his health. This may have also impacted the efficiency of the thought process Van Gogh went through to formulate his artistic intentions but (as evidenced by his letters) not the content of that thought.

I believe that within disabilities that allow at least periods of lucid thought (e.g. Parkinson’s) there is a difference between the intact formulation of intention and the lack of ability to carry out the intended act. Indeed, the disparity between formulating a reasonable intention (e.g. getting a glass of water) and being unable to fulfil its demands may be a measure of the impact of the disability. Of course, within a disability affecting the content of reasonable intention this logic does not apply (e.g. a delusional person); the content and act are both missing.

It is wrong to assume that Van Gogh or a person with Parkinson’s lack conscious intention within the physical and mental confines of their disability; either when the perception or actuality of the disability masks that intention.

Taking things for granted

When you stop reading this and inevitably turn your attention to something else you will leave my Parkinson’s behind, allowing it to recede into the background. Parkinson’s has a strong but limited physical sphere of influence within the body of a sufferer and as such there is a clear boundary beyond which it has no influence (i.e. it cannot “infect” non-sufferers). This means when you go my Parkinson’s remains with me; there is no edge to the disease for those suffering from it. Even when I stop thinking about my disease, it remains in the symptoms I feel; for example, in my tiredness and depression. Parkinson’s is part of me and of course I accompany myself wherever I go! This is the chronic nature of Parkinson’s.

Of course there may be no emotional edge to the empathy felt for a sufferer and I am very grateful for this support. But I am also pleased you, as a non-sufferer, can physically leave my Parkinson’s behind; you have that freedom and choice. I beg you don’t take that freedom for granted. Live up to its immense value. Try your best and enjoy what you are capable of doing. Don’t waste the potential your freedom of movement gives you. I took movement for granted before my Parkinson’s emerged. If the genetic shuffling of the cards was slightly different you might have ended up in my position.

I may be in the process of losing control of my body but this has taught me the value of my mind and the wonder of having a thought. What a marvellous thing to do! I am trying to live up to the value of thinking by continuing to learn and encouraging understanding in others.

What does Parkinson's feel like?

To the non-sufferer, the list of symptoms associated with Parkinson’s disease can be just another list, an objective assessment of what somebody is going through. However, a list of symptoms tells only half the story. What is missing is how those symptoms feel. It can be difficult for a non-sufferer to walk in the shoes of a person with Parkinson’s. Even for a Parkinson’s suffer it can be daunting to learn what affect the disease is having (those shoes can pinch for a while!). Symptoms can appear to be getting worse as you learn; in fact, your symptoms are the same, you are just becoming increasingly aware of them.

So, what does Parkinson’s disease feel like? I can best describe my Parkinson’s using an analogy: my mind is swimming in water while my body is swimming in treacle. It feels to me that there is a disconnection between my mind (which is agile and free) and my body (which is slow and restricted). The wire connecting them has become faulty, allowing only intermittent signals through. Imagine you are standing in front of a full-length mirror and you will your arm to move. In your mind’s eye you expect an immediate, smooth response. What you feel and also see in the reflection is different; the arm isn’t cooperating, it moves as if pushed by a snail. You quickly pour sustained concentration into the engine and the snail reluctantly picks up the pace. The movement is finally completed. It feels like you’ve moved your arm ten times; special offer = 1 for the price of 10! Such is the economics, restrictions and feel of Parkinson’s.

Dealing with the preconceptions of others

We all make assumptions and form preconceptions about the incredibly complex world in which we live. It is the only way to navigate such a world. However, some people don’t then go on and question whether such assumptions are valid in a given situation. These people live at the surface of their awareness.

For example, my tremor was particularly prominent one afternoon. I went into a shop and the person behind the counter said to me, “are you feeling cold, sir?” Maybe I missed the joke but I decided to be honest, so I said, “no, I’ve got Parkinson’s disease.” A flood of apologises emerged from the person. He wished me a good evening and I said, “I will and I’ll warm up too!” A little bit of self-deprecating humour showed that his supposed superior response to my tremor was totally misplaced. Maybe I taught him something that day.

Another example I’ve encountered is when people equate my physical disability with my level of intelligence and talk…really…slowly…to…me. I happen to have a doctorate (DPhil) in Genetics from Oxford University so I think I understand what you are saying! Such “do…you…under…stand?” people should assume their listener does understand and then, if the need arises, modify the assumption.

A far harsher form of preconception you may encounter is prejudice, which can be defined as judging people (usually negatively) based on physical characteristics or ethnicity or disability. I believe such a judgement is absurd. We were thrown into the world in a particular state when we were born (Heidegger calls this our “thrownness”). Nobody is responsible for their thrownness; we didn’t choose whether we were male or female, had dark or light skin, were susceptible to Parkinson’s or not etc. Therefore judging a person’s thrownness is an empty judgement; the judgement doesn’t apply to the person being judged. Indeed, it’s a judgement about nobody. Judgements should be made on the basis of who people are, not what they are.

I feel sorry for people who live their lives without empathy and self-awareness.