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.