I am a chair who wants to sit down and rest

I feel like a chair who, after working all day being a chair, wants to get home and have a rest; but when the chair sits down and rests he does the exact same thing he does when he is busy: being a chair!

Parkinson’s is a chronic disease; it accompanies me wherever I go and whatever I do. This disease of mine feels like a job I never applied for; the reward for working so hard is moving Parkinson’s around my life, like moving a tonne of sand from one end of a long corridor to the other…and back again…and again… Even when I lean my spade against the wheelbarrow and go for a rest I fill my pockets with sand while I am sat down.

No matter what I do I will be Parkinson’s. Equally no matter what I do I will always be me. The art of living with a chronic disease is maintaining awareness that being yourself alongside the disease is also a chronic condition…

Going on a diet

The prognosis of Parkinson’s is like a big spider that wanders after me wherever I go. If I turn around and try to kick it away another 8 spiders appear and follow me. If I then try to kick these away another 16 spiders appear. I’ve learnt the habit of trying to run away from the spiders by being constantly active and exhausting myself in achievements; whether it is writing, going to Yoga, visiting family and friends. I think if I can stay ahead of the spiders then I can keep my disease from overwhelming me.

However, trying to run away is the same as trying to get the spiders to leave me alone. Actively engaging with the prognosis just causes my fear to increase and more and more spiders to appear. It is a self-fulfilling prophecy. It's like I am exhausting myself by trying to bake and eat as many chocolate cakes as possible to give me enough energy to run away before the spiders overwhelm and crawl all over me. It is inevitable that I will vomit up all that cake and the spiders who follow me will eat it and grow stronger. Therefore, I need to go on a diet and eat less cake and try not to exhaust myself. I need to learn to not engage with the spiders because it is my focus on them that keeps them in sight. By living alongside my disease and trying to eat sensible portions of cake then the spiders will walk past me and disappear into the unknown future.

This is my 250th post!

Living with Uncertainty

Where do my thoughts come from? You can answer "your brain of course!" But that tells me next to nothing at all; that's saying the earth is in the universe but nothing about where the earth came from or how the earth works. Thoughts appear to emerge spontaneously from nowhere within “my brain”.

Why can't I know where and how my thoughts emerge? Thoughts are created by a process; like music, they emerge from nothing, exist for a while and then fade to nothing. Within this process thoughts are incessantly effects (i.e. a sound) created by some cause (i.e. a musical instrument). Therefore, if we try to think about the cause of thought, the thought itself is an effect of that causal process and as such cannot access its cause (i.e. the sound cannot turn into the instrument).

Thinking is like eating a cake (effect) without knowing the ingredients and process that creates it (cause). Therefore, we live with the fundamental uncertainty of where we come from. Most people find shelter from this uncertainty in religion and find great comfort in saying, “God created me”. However, the question must follow, “but where did God come from?” God is a thought and therefore an effect and cannot be the cause of thought. Only unthinkable things can be the cause of thought.

Even in our shelter we are still uncertain. I say learn to live with this uncertainty; there are things we can never be sure about. For instance, there is no way to be certain about my future with Parkinson’s disease. The effect of the process of thinking (i.e. thoughts) cannot occupy the future because they are caused in the present. We can think about and plan for the future but this plan is still thought of in the present.

No matter what we do, we are thinking in the now; we need to be aware of this and not get dragged into the false “certainty” of the “future” or pretending to know the cause of thought.

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.

A piece of cake

The waitress placed the slice of triple chocolate cake down in front of me. It looked delicious! But instead of eating it I asked the waitress, "Where's the rest of the cake? I want the whole cake!"

The waitress replied, "I don't understand sir, you have got the whole cake". I looked down at the plate and it was true, there was a whole cake in front of me!

I tried not to devour it all at once. I ate it one spoonful at a time, allowing the chocolate to wash around my mouth and dance on my taste buds. You don’t have to rush these things!

How do you know you only have a slice of cake when you may in fact have the whole cake? Why not take your time with life, savour what you've got and enjoy every moment and every mouthful? Bon appetite!