A familiar stranger in a strangely familiar land

It's a strange feeling to go back to where you used to live (especially your childhood home); you feel like a stranger in a familiar place, as if the place itself has moved on while somehow staying the same. But, of course, those surroundings haven’t changed, you are the one who has moved on and helped to redefine yourself; those old surroundings define who you were in the past.

It is even weirder to feel like you haven’t changed but your body has moved on without you. That's what Parkinson's has done to me; I'm a stranger in my own body. I have been trying to become acquainted with my new surroundings and crucially reacquainted with myself but my body looks at me suspiciously and I plead with it to give me back my identity.

My body, in particular the conscious control I have over it, forms the fundamental basis of who I am; when that control starts to go, I start to go and I end up perpetually running after myself in surroundings I don’t recognise. That's what Parkinson's feels like to me...

Diplomatic immunity

Sometimes its great being an adult; true, you have to be responsible, look after yourself and a significant other, be a good member of society, get married, deal with diseases such as Parkinson’s, look after children, work in a job you don’t enjoy… But sometimes its worthwhile going through those teenage years: Exhibit A, you ask?

I’ve just made three banana and chocolate chip American pancakes, smothered them in Cadbury’s chocolate Philadelphia spread and placed a scoop of double chocolate ice cream on top…and had them for my dinner. That’s right, a dessert instead of a main savoury meal. Every kids dream dinner! And I have diplomatic Adult immunity from prosecution; nobody can tell me off for stuffing my face with such sweet deliciousness!

This is the pivot that my Parkinson’s attacks so effectively. It takes away my ability to do spontaneous things like having sweet instead of savoury or jumping in a car and travelling to London just because I can. It doesn’t take away the idea or impulse to do these things but devastatingly will eventually simply remove the link between my conscious will and my ability to accomplish such things; my pancake making days will be over. This is the cruelty of Parkinson’s; you gradually give up the privileges of being a functioning adult and you have to hand back your diplomatic Adult immunity.

There is a problem I suppose with being an adult; eating all that food has given me a belly ache and when I say, “My tummy hurts,” no one is going to listen to me! Sometimes its rubbish being an adult!

"All was as cold as any stone..."

I used to think of myself as the surface of a block of marble: as if I was dragged towards the outside limit of myself and became my surface by the opinion of others. I was mistaken. I am also the figure within the marble but I am free to be in any part of my interior. I see this thanks to the presence of Parkinson’s in my life. It has chipped away at the exterior of the marble and revealed parts of me I never knew existed (e.g. courage, even greater stubbornness and a fighting spirit). As in sculpture, taking away something can also be a means to add something.

The tragedy of Parkinson’s is it doesn’t stop chipping the marble away…

It neither proves nor disproves my worth

I sat down and turned to face the interview panel. I was nervous, my palms were sweaty and there was a knot in my stomach.

"Ok, Jonathan, tell us a little about yourself..."

Deep breath, "well..." Before I could finish Parkinson's, who had sneaked into the interview room behind me, screamed at the top of his lungs and then ran up to each interviewer in turn and slapped them hard in face. Tables were overturned and coffee cups were thrown on the floor. Before sitting down next to me Parkinson's shamelessly defecated on the floor.

I continued, "Whatever I say you are going to judge me how you wish. You are going to selectively listen to me and try to make me into the person you want me to be. Of course I don’t know what you want so I’m not going to play that game anymore. I’m just going to be me. Whether Parkinson’s defecates on your nice clean floor or not…"

“Whatever Parkinson's does, it neither proves nor disproves the value I or anybody else can see in me. Parkinson’s is part of me for sure but I am bigger than its influence. Other people can choose to see only the symptoms, they make Parkinson’s noticeable…”

Row of black eyes

“I feel ill, I’m going back to bed.” I drag myself to my bedroom and upon opening the door I see a huge spider scuttling around on my bed. It must be a metre wide. The spider hears me, stops its scuttling and turns to face me. It’s row of black eyes look at me intently and as it nervously moves its legs says: “Sorry, there’s no respite for you, nowhere for you to go to get away from Parkinson’s. I am always going to be there, crawling over your body and through your mind, spinning my sticky, silken webs to ensnare you.”

I turn away and leave the bedroom but I hear behind me the scuttling of legs and then the feeling of those legs on my back. I momentarily stop walking. “Hello again…” I continue on my way…