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…

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.

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…

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.