Only Connect

Only connect! That was the whole of her sermon. Only connect the prose and the passion, and both will be exalted, and human love will be seen at its height. Live in fragments no longer. – E.M. Forster

I have become the type of person I hate in Japan, the one who hogs the seats on trains. You know the type, the gaijin or salaryman with the wide stance who thinks the entire carriage belongs to him. Let me tell you how I became such a person.

I recently noticed that as I get older and the pain I experience due to cerebral palsy (and maybe the beginnings of middle age) have made me socially inert. I was never been the life and and soul of the party, I’ve always been one who prefers his own company, and maybe that of a good book, but now I catch myself actively avoiding human company. And that, I feel, is not good. The pain of course, is not pleasant and the inability to be out and about for long periods without pain or collapsing, is far from fun, but that is no the worst thing about having a disability. The worst part is how having a disability dictates how you respond to people.

It would be easy to dismiss this as due to the fact that I live in Japan and am not Japanese, that whilst I am trying to learn Japanese, it’s inevitable that I will be socially isolated. And between the drunk salaryman trying to practice his English or the curious child seeing their first foreigner with a disability, there are many good reasons to turn on the smartphone and slap on the headphones, which act like a ring of steel against social interaction. It’s surely OK to build a wall of sound around yourself, to protect yourself with podcasts and YouTube videos, isn’t it?

And what do the headphones of solitude protect me from? This was a question that occurred to me recently. It may indeed offer some minimal shielding from unwanted, and upon rare occasion intimidating encounters here in Japan, but on closer reflection, I began to realize that that was no the reason. Rather I was trying to protect those around me from myself.

It’s something I first noticed some months ago visiting Britain, I met an old school friend. As the friend hugged me hello, which placed pressure on my left side, the side affected by cerebral palsy,II felt anger rather than joy at meeting my friend. It wasn’t their fault, they did not know it would cause me pain, they had after all not met me for about ten years. And yet anger was still my initial reaction, albeit a reaction I attempted to hide.

My body often spasms, and those spasms are involuntary, my arms and legs on my left side have a tendency to flail and hit a passenger sitting next to me on a train or as I am walking down the street. You find ways to isolate and distance yourself physically. The empty seat next to you is your friend, it means that on this journey at least, you won’t do anyone any harm.

Pain can also make you a mean person. It’s not simply that you avoid people, perhaps on the white understandable assumption that you could hurt them, you begin to people as something to be avoid, and obstacle on your way from A to B, rather than a potential encounter with a fellow human being.

I know, of course, that most of it is in my head, most of the time my body won’t actually spasm and flail and that I might go many a train journey without injuring anyone. However, there is that word ‘might’, the fact is that occasionally my body does seemingly act independently of my will, so I fear, however unreasonably, that it is only a matter of time before I get accused of assault through some involuntary movements of body.

Maybe assault charges are unlikely, but here is something I can foresee happening. I shall become the destroyer of smartphones. Recently JR East, the railway that serves Tokyo relaxed its rules on using mobile phones in the priority seats area. It seems, on face of it to be a perfectly reasonable adjustment. After all many people use them anyway, regardless of the warning not to do so. Despite their being banned at hospitals, mobile phone signals don’t seem to cause any problems for pacemakers. So we should all be free to call people from the priority seats, right?

Believe me, I sympathize with those who want to make calls from those seats, I have, to my shame, made calls from them too. However, if you are sitting on the left of me, and holding your phone or your lap or near your ear, there is every possibility that it will be knocked out of your hands by a spasm, and there is little I can do to prevent that happening, if you are sitting too close, as many of understandably do on the last train home.. If you don’t believe me you need only examine the scratches on my own generic smartphone – which I keep discreetly hidden in a bumbag on train journeys, with only headphones protruding from its safe haven, lest it fall foul of my own disability.

I know it’s a drag, but priority seats are meant for people who have a body which at best can be characterized as unpredictable, and whilst the embargo on mobile phones is ridiculous, I have no doubt that in my case, the prohibition has prevented some nasty, not to mention expensive accidents.

I have come to the sad realization that sometimes good fences do indeed make good neighbors.

Long Time No Write!

I haven’t written much on this blog for some time. There are two reasons for this hiatus. Firstly, firstly much of what I want to write about doesn’t fit in short, easily digestible chunks that for which a blog is suited. 

However I have been writing and some of writing will appear in my short e-book (or e-booklet) ‘The Crysanthemum and the Stick’ in mid Septenber. 


Another Man’s Shoes

I’ve always liked the idea that at times, it is good to walk a mile in another man’s shoes (other sexes and genders are available). And there is a particular reason why I like it. Part and parcel of having cerebral palsy is this lovely present; your feet are of entirely different sizes. My left foot is a size wider and smaller than right, the latter being unaffected by my hemiplegia.
I often think about this metaphor of shoes, when I am faced with this phenomenon , the person I’ve come to call ‘Kind but privileged person’ this is the person who doesn’t understand why I continually reference my disability, as if I could just ignore the fact that I am often verbally and physically assaulted. Just don’t talk about it they say, talk about other things, there so much more to you than your disability, adopt a positive attitude and forget it, ‘be comfortable in yourself’ , such a person exclaims cheerily.
And I suppose life would much easier if I did forget it. I probably would be happier, but it is difficult to forget that you were physically assaulted twice in the last three years and that those attackers, referred to me as a ‘cripple’ and ‘f**king scrounger’. No, that is not something with which I can get comfortable.

And this is what I am thinking about as the orthotic consultant slips a shoe on me and asks ‘Is this comfortable?’

 I want to answer like this: I’ll to get back to you.

Thirteen Hours B.C.

Yamada Suita 8:41am
Time has always been important to me. There are only so many hours in the day. I know from experience that that my body will begin to shut down in about twelve hours from the moment I awake. I have to do all I want to do in that time.

So you may notice that I not exclusivel  use the clock to describe my day, but something I call ‘B.C’ time. No I am not waiting for the Second Coming, ‘B.C.’ stands for ‘Before Collapse’

I do apologise, did I mention I have a disability, specifically, left-sided spastic hemiplegia?

I can of course power through for a few hours or so longer, but not for that much longer, my body will require me to rest, I am living on borrowed time.

And did I mention that I live in Japan?

May ask you? How do you begin your day? Maybe a coffee and some carbohydrates , maybe a complaint about having to get up in the morning? I begin the day with this question: Is today a walking day?

Cerebral palsy, or to give the specific variation I have – left sided spastic hemiplegia often leaves me physically encumbered. I may live in Japan and would love to spend every non-working moment visiting the temples of Kyoto or the metropolis of Tokyo, but given my condition it’s something I really can’t do.

 The worst part about with being disabled is this: there are days when you can’t get out and about and yet you suspect that something interesting is around the next corner. Time becomes important to you when you have a disability. I know I have only a few hours of being useful, of being able to be physically active. You have to learn to use your time wisely, you have to plan, you have to make decisions. Will you be able to get up early? Is today a day you can walk up steps – Japan is home to many a steep staircase. Can you walk up the steel staircase and get back down it?

There are some days when my answer to these questions is no, but there are days when the answer is yes. Thankfully for moment the ‘yes’ days outnumber the ‘no’ days.

One Cane, One Umbrella, One Hand 

I don’t mind Mondays, but its rainy days that always get me down. It is now rainy season in Osaka and for the next thirty-six hours or so it will rain solidly, the kind of rain that that Bob Dylan used to sing about.

The rain itself really has a kind of beauty of about, it beats the ground with some force, and when it does the sound it creates, is a wall of sound of which Phil Spector would be proud. It really is amazing, if only for its duration. Rainstorms, in the country I hail from of at least, rarely last more than two minutes. Here in the Land of the Rising Sun, they last many hours, almost a day.

Of course you carry an umbrella. Really good and sturdy umbrellas are sold at every convenience store. And they are quite wide umbrellas; quite enough to cover your entire body, not a drop will touch you, unless of course you are carrying a walking stick in the other hand.

Welcome to the problem of one, stick, one umbrella, one hand. Not as sexy as two girls, one cup, I grant you, but important nonetheless. I cannot do much with my left hand, I can grab, but I do not have enough co-ordination to move. It is basically a robotic arm,that just happens to be on a human.

My balance goes completely. I attempt to dance the delicate ballet that is the dance of stick and umbrella. It is a rather violent dance which the stick usually wins. I simply cannot walk carrying both. I give up on the umbrella. After all it’s only water, what does it matter if I turn up to work on the brink of pneumonia?

And the rain is rather beautiful.