After a recent meeting someone pulled me aside and asked if I was angry with him. I was surprised because not only was this person someone I liked and respected, but I wasn’t the least bit angry. After reassuring him that everything was good between us, it dawned on me what had occurred. Parkinsons has a fairly dramatic affect on facial expression, so as my meds wear off there can be a quite significant gap between what I’m feeling and what my face expresses. The deadpan look that can come across my face can quite easily be read as disinterest or displeasure.
It has given me a new appreciation for body language and how important it is in the process of communication. Which in turn got me thinking about God and the difficulties the lack of a body presents to communication with us. When you can’t see a face, observe arms folded in a distancing manner or \stretched wide with welcome, or a body facing towards you with great intent or facing away from you with great indifference, it’s difficult to know what God is really feeling and thinking.
The theologically astute among us will now expect me to launch into a spiel about Christ as the incarnation of God. But I’m not sure that helps me too much, because Christ is no longer bodily present among us. No, I draw two other conclusions from God’s lack of a body.
First, God is mysterious. I know people talk about the overwhelming love of God, but in the absence of bodily expression for me that remains a conviction rather than something that is experienced as directly and deeply as when I am held by my wife or children. God’s love is no less profound, or important, or meaningful; it’s just not as bleedingly obvious.
Second, it highlights the part we play in making God real to one another. In the opening chapter of the Bible we’re told that we bear the image of the Creator, that we represent God to each other. It’s the very fact that I am held by my children and my wife that allows me to understand what it means to be held metaphorically by God. It’s the very fact that I am welcomed by others in bleedingly obvious ways that enables me to imagine that I’m welcomed by God even if it is less bleedingly obvious.
How ironic that as I become more like God with regards to body language, I become less able to communicate God through my body language. How important it is that we use our body language in whatever way we can to articulate the glorious love of God to one another.
Parkinsons brings a lot of unwelcome firsts.Recently it was the first time I had to ask someone to cut up my meal. There were three of us out for lunch. A beautiful cut of meat lingered on my plate. The steak knife was sharp. But my tremor meant all I could manage was a constant chinking of the knife against the ceramic of the plate. I concentrated every ounce of energy I could summon on making that bloody knife cut through the succulent meat. But all to no avail. Finally admitting defeat, I asked my friend if he could cut it up for me, which he did graciously and without embarrassment.
I take medication that helps control my symptoms. The meds take about an hour to kick in and gradually wear off over the next five hours. How glorious is the first hour or so after the meds have taken effect. The stiffness in my muscles, the tremor in my hand, the shuffling gait, the deadpan face, all dissipate almost to the point of non existence. For 3 hours a day I get to remember what it’s like to be in control of my body, to be able to cut through my meal, to walk freely, to type with both hands, to hold my wife without the tremor of my hand tapping constantly against her back, to get out of the car with ease.
In those three hours I glimpse the resurrection. The New Testament declares that a time is coming when we and our world will be remade, that the resurrection of Jesus was the prototype of the future of creation. Those three hours each day when I experience freedom from the dysfunctions of my disease and the frustrations it brings, enable me to taste the future. How delicious it is!
I scarcely dare hope for a world where war has ceased, poverty is but a memory, violence and hatreds have given way to love, pain and suffering to pure unadulterated joy, and creation is healed. But for three hours every day I get to see it, taste it, smell it. If Parkinsons has unwelcome firsts it also brings unexpected gifts, and this has been one of the chief of them.
I boarded a crowded train a few weeks back. It was a day when my tremor was particularly bad. A thoughtful woman offered to find me a seat, which I declined. Then as I struggled to manoeuvre my phone into an already full bag another passenger tried to help me. Without saying a word he unzipped the bag, took my phone from me and put it inside the bag.
Part of me was thankful that a complete stranger noticed my struggle and took the initiative to help. Another part of me wanted to scream “Leave me alone. I can do it myself!”
A good friend told me a while back that while I had spent my life helping others he was not sure I’d be very good at receiving help. He was right. I had never realised how difficult it can be to receive help. It’s an admission that I can’t do it on my own, that I am less competent at some things than I used to be, and somehow feels like an erosion of my humanity. At the same time I feel that I am imposing on others and I don’t want to be a burden.
We recently painted the exterior of our house and I knew I could not do it myself. My brother and his father-in-law very generously volunteered themselves but we’d still need a couple of extra hands. It took every ounce of strength in me to ask for help, but I finally got up the gumption to send an email to the church we attend asking for assistance. The response was overwhelming. Over the course of the four days set aside for painting a small army of volunteers showed up. It was a humbling experience that proved to me once again the power of community that can be ours if we swallow our pride and just ask for help.
But it’s a fine line. For while I need to ask for more help than in the past, I also want to maintain as much independence as I can for as long as I can. When that guy on the train silently took charge he robbed me of the opportunity to get my phone into the bag myself. It may have taken me longer, but I would have managed in the end.
So it seems there’s not only an art to receiving help, there’s an art to giving it too. My advice? Ask before you act. This gives the recipient the opportunity to say yes and to say no. And when you get a “no”, don’t keep on insisting for that simply causes embarrassment. In offering help you show me generosity and love. In asking me first you show me respect. In acting when I say yes you show me grace. In living with your discomfort watching me struggle after I say no you give me dignity.
And in learning the humility of both receiving and giving help I suspect we become a gift to each other.
Until my Parkinson’s progressed I never realised what a fine art it is pulling on a pair of socks. I always thought the challenge would be things such as tying up my shoelaces, but it appears that pulling on socks requires fine motor skills that are more sophisticated than those of tying shoelaces.
The Easter story has always resonated with me, but it has become even more deeply resonant as my bodily capacities deteriorate. For Easter is all about bodies. Easter is visceral. Good Friday tells the story of a body bloodied and bruised, of arms and legs held nailed to a cross, muscles screaming to stretch but unable, hands unable to lift a cup of water to parched lips, of a man who was once in full command of his body now reduced to dependence upon others for the merest comfort.
And then three days later resurrection. Having experienced the physical weakness of the cross, I wonder whether the resurrected body was even more sweet an experience for Christ. As life flowed once more through his veins and his body was not only brought back to life but made qualitatively different, never again to be subject to the violence of the cross nor the slow march of decay, were there moments of pure joy and exultation at the free movement of a fully able frame?
For that is the promise of Easter for those of us who struggle with some kind of physical disability, that once again it will be easy to bend down and pull on socks, that once more we will have that joyful experience of a body fully yielded to the will of its owner.
And it is of course part of the greater promise of bodies, hearts, minds, relationships, communities, and environment all liberated from the limitations and disablings of the present. How glorious it will be.
I was on the train from Newcastle to Sydney a few weeks back. It was a Sunday afternoon and the train was packed. I was sitting in one of the designated quiet carriages where conversations must kept to a minimum, phones are to be put away, and if you listen to music you must do so through headphones.
At Gosford a woman of similar age to me boarded the train and set beside me. She was rather annoyed and flustered because on this particular Sunday afternoon the quiet carriage was anything but quiet. Shortly after the train resumed its journey she noticed my trembling right hand and asked what the condition was. When I replied that I had Parkinson’s she reached across and gave me a long and warm hug. Upon release she commented that her grandfather had died with Parkinson’s and she felt for me. It was a spontaneous, generous display of empathy.
Moments later I saw the opposite. A Chinese man was speaking rather loudly into his mobile phone for an extended period of time when my travelling companion turned to me and muttered “Bloody Chinese. They think they can come here and do anything they want!” I suggested that perhaps a more likely explanation was that the gentleman across the aisle was not a frequent user of the train and simply didn’t know it was a quiet carriage. My companion would have nothing of that.
What strange creatures we are, that we can engage in spontaneous, generous displays of empathy towards one human being and lack it altogether towards others. The nub of the problem it seems to me is who we view as belonging to “us”. When we see another person as like us we find it easy to empathise, but when we view them as other, as unlike us, empathy makes way for a hardness of spirit.
So I was doubly blessed by this stranger who got on the train at Gosford. I was touched by her generous display of empathy towards me, and I was reminded by her distinct lack of empathy for our Chinese traveller of my need to continually work hard at seeing every fellow human being as a member of “my group”.
“Why do you think God allowed you to get Parkinsons?”
This question or some derivative of it is commonly put to me, or if not put to me directly, at least thought about. Behind it lies the assumption that there must be some divine purpose to everything that happens, including the bad. People want to make meaning out of suffering, and thinking that it is part of a grand plan of God helps them find that meaning.
To me the question doesn’t make much sense. Certainly there is purpose to some suffering: the death of Christ; the pains of childbirth; the soldier going to war. But it strikes me that most suffering is not like this. Where is the higher purpose to the child starving to death; a body wracked by disease; or a person being the victim of a brutal and violent attack? Suffering in the first and last of these instances reflects the utter banality of evil, while the middle case surely reflects the chaotic nature of what from a Christian perspective is a broken world.
To ascribe a higher purpose to these forms of suffering is to turn God into a practitioner of a perverse kind of consequentialist ethic where the end justifies the most abominable means. And I can’t help but feel that it somehow diminishes the chaotic, disordered, and at times malevolent nature of evil. That’s the “genius” of evil. It has no purpose. It simply destroys.
As I read the story of Jesus, the great comfort is not that there is a higher purpose to everything that happens in my life, but that God, rich with love for all he has made, is acting purposefully to bring to an end all that diminishes the flourishing of creation. Consequently, while I see no grand purpose to my Parkinson’s, I do see a grand purpose to my life and to what God is doing in the world. I draw comfort not from the idea that there is a reason that I suffer, but from the hope that a new world is coming in which suffering will be no more.