To one side

I feel like a little corner of my world has unfolded like a tiny flower: when I think about Parkinson's I no longer get the overwhelming, anxious, despairing feeling that it will always be my dreaded companion and will eventually rob me of myself. Feelings can be changed by thought and I am free to think whatever I will about Parkinson’s.

It might be the stage I'm at in coming to terms with my diagnosis or the effectiveness of the medication but I no longer hold Parkinson's preciously, constantly in both hands; I can occasionally put it to one side, maybe for a few minutes. How will I best use this opportunity?

I finally see space beyond Parkinson’s that can be shaped and occupied by me. I want to use the tiny flower in my landscape to generate pollen that will help grow other tiny flowers in the lives of other sufferers. I want this opening up of understanding to be the legacy of my Parkinson’s. It is an expression beyond the confines of my disease and comes from the very heart of me. I want to write a book, a chronicle, of my journey to this point…

The tragedy of self awareness

Othello foresees the consequences of Iago’s poisonous uncoupling of his jealously, he recognises that if his love for Desdemona is proven to be cheap and empty, “Chaos is come again”. When Othello’s jealousy develops into a murderous hurricane this awareness is subsumed by the chaos; only to re-emerge at the instant before he murders his innocent wife; he catches sight of himself but realises he has travelled too far into the chaos that he and Desdemona cannot escape its consequences, “It is too late”. Once Desdemona is dead and Iago’s deception is made clear, Othello’s awareness of the horror of what he has done consumes him. Iago remains silent about his reasons for his deception, despite being the very vocal manipulator of the play’s action (Iago is almost the writer of the play, not Shakespeare) because they were expressed in Othello’s jealousy.

Othello’s tragedy is his awareness of the chaos within him and his inability to contain it. Without self awareness, Shakespeare’s greatest tragic characters (Hamlet, King Lear, Othello, Macbeth) would not carry the tragedy with them.

Like Othello’s awareness of the coming chaos within him, my tragedy is the awareness of the approaching chaos of later stage Parkinson’s disease. Desdemona is the future and Iago is the prognosis of Parkinson’s; he whispers in my ear that Desdemona is corrupted, that she loves not me and has escaped me to lie with Parkinson’s. Iago unleashes my jealously that Parkinson’s has stolen my future. It is my awareness of this corrupted future that is my chaos…

The triumph of self awareness

But it is not too late for me. I am not subsumed by the chaos as Othello is. I retain the ability to be in the audience of my own thoughts, which provides a distance and a counterbalance to my approaching chaos (Othello needs to recapture this but gives Iago, the very poison, his place in the audience of his thoughts). Awareness is both a tragedy and a triumph; it informs you of the chaos of approaching danger but also gives you the opportunity to deal with that danger. I am trying to be alongside the perception of a corrupted future and with this awareness purify and recapture my present…

"A spoon full of sugar makes the medicine go down...": taking the time to listen to you

A crucial aspect of my treatment for Parkinson’s disease has been a medical professional (whether my Consultant, Parkinson’s Nurse, Occupational therapist, Physiotherapist or GP) sitting down and taking the time to listen to me and help me explore my disease.

Obviously, I haven’t had Parkinson’s before so getting the opinion, the undivided attention, of an experienced professional has been psychologically of great comfort. I have felt I wasn’t alone in the daily battle with my disease. Of course my family and friends give me incredible support but it is that detached, objective support that a medical professional gives which is also of benefit.

However, this aspect of my treatment has started to be overlooked. I have been told I can no longer see my Physio and Occupational therapist; it seems I have used up my NHS tokens. I see my Parkinson’s nurse and then my Consultant at 6 monthly intervals (meaning I see each of them at yearly intervals). I can e-mail my Parkinson’s nurse and I appreciate this but her reply is just pixels on a screen. There is nothing like seeing the concern and determination of a person in front of you.

I believe that living with a chronic, incurable progressive disease requires the feeling of not being abandoned by the NHS and the medical profession. Reducing the waiting time between appointments, having regular appointments scheduled (if spaced apart) with a Physio or Occupational therapist, having consultants and Parkinson’s nurses attend more Parkinson’s UK meetings or holding open days at medical or scientific conferences for the general public would engage patients more and help them understand. This is the crucial point – feeling abandoned is being unable to teach yourself about what is happening to you and what you can do about it. Treatment is not only about taking tablets; it is about empowering patients with knowledge so they can be, in the day to day challenge of a disease, something like their own doctor.

“Eyes without a face”

Inspired by the Georges Franju film

Parkinson’s disease stole my identity and took my face from me. To cover up the loss and to prevent anyone seeing the horror of what was left behind I wore a Parkinson’s mask of expressionless white; only my eyes betrayed the grief and loss I felt. Without an identity I could fit into the gaps in the world and I hid myself away. I was then free to rely on others to give me a person to be; my self-worth was tied up with what they thought of me and I would graft their opinion of me onto the mask I wore. I felt satisfied with the role until I met someone else; then I had to graft another face onto mine. In such tiring anonymity I lost myself in my disease.

However, I knew I remained the same beneath the scared muscle and bone of my stolen face. It was curiosity that made me peel off the Parkinson’s mask; curiosity of what was left of me. Standing at a mirror, mask in hand, I looked at my eyes first and saw the spark of me. I dared to move my gaze around the contours of my face and with a rising heart I recognised every part. Parkinson’s had changed me, for sure, but I could still be me and I could see the light and the dark passing through me. I dropped the mask…