The brain churns away like an old electric concrete mixer, going endlessly around and around, just now and then tipping out something useful. My brain at least, your’s may be a purring, whizzing wonder. Little by little, I find myself thinking of new ideas, new ways to see.

The trick to typing is this: Use one eye only, and pretend you are writing by hand. Look only at the word you are typing, and having finished a paragraph DO NOT re-read it.  Tripple Click on the finished thought, and use Text to Speech to read the paragraph aloud.  Avoid looking down to the keyboard if at all possible – fortunately I can “touch-type”. This is the method I’ve discovered to avoid eye strain.  As long as I keep my eyes still, not scaring left to right, left to right, left to right …. I can see reasonably well.

This is this week’s discovery, and if it goes to plan this post may just work.

For the first time since my physical health turned south, just over nine years ago, I’ve found myself for most of almost three weeks to be despairingly sad, a deep shade of blue. The “grumpy” episode I wrote about last time turned out not to be one off. It was not, as I had thought, just disappointment at a delay in a long awaited optometrical solution. I realised this when the glasses with prism lenses duly arrived, made a huge difference to my sight, but little difference to my mood.

I am not by nature a sad person.  I am sometimes rather shocked by the stern, vaguely sad look on my face in a mirror, but it does not at all mirror the general feeling of my soul which is glad and bright more often than not. The despaired feeling of these few weeks was not completely unknown of course: being human brings you inevitably into contact with every emotion. But the persistence of the feeling: the unshifting, pitying, bleak-black soul darkness was unlike anything I could remember.  Sadness was everywhere I looked. Thoughts that seemed unable to rise above impending doom on every front. When the Liberal government failed to endorse the recommendation of Australia’s Chief Scientist to implement a Clean Energy Target I felt as though the future of mankind had been sealed and doomed for ever and ever.

So I took my blighted heart to my regular GP appointment this week and asked her if this was normal. “What”, I asked, doubting that anyone could give me an answer, “is wrong”. I have a terrific doctor. She listens carefully, follows up every thought and lead, and is not afraid to offer advice or a reframed view of the situation. After a few more probing questions she said it sounded like grief, and asked me,

“What are you missing? Is there something you have lost?”

I replied without a moment to process the question. I didn’t think at all, the answer was immediate:

“I miss my eyesight; I can’t read”.

Years ago I wrote a post in Rejoice! titled, The Gift of Loosing Things. I had lost my driver’s licence, and a number of other important things in life besides. It’s a good essay I think, there is wisdom there that I still draw from – I hope that doesn’t sound immodest, but sometimes a person can write to themselves as much as to others. But none of that wisdom was adequate to my experience of vision loss. It has far eclipsed the challenges of mobility, my early terror of wheelchairs, the pining I feel at times for useful employment, even loosing the ultimate joy of running wildly in the park with my little girl. Vision loss is the toughest of them all.

But months have passed since this began, and much has been regained. The prism glasses first and foremost – they are such a help, even though the world I see through them has an oddity about it that defies description. I’ve filled books – small ones – with handwriting, discovering that writing is the perfect activity because your eyes don’t

really move much.  I’ve spent a great deal of time on a newish hobby: Pyrography, burning designs into wood, which is very similar because your eyes stay fixed on one part of the pattern for a long time. After many attempts I think I’m learning to listen to audio-books. Initially I found it impossible to concentrate in the way that you do when reading, and I could not retain anything much that I heard. Perhaps it’s a wonder of neuroplasticity, but for some reason feel I’m using my brain differently now and audio-books are starting to make sense. Looking for things, roving your eyes around a room to find that missing item, is one of the hardest tasks and my biggest problem. So I’m organising, being very deliberate. I have a corner of the kitchen bench carefully laid out which nobody else is allowed to touch! Theoretically.Sincere thanks to those readers who read right through my hand-written post and told me they had.  It was needed communication, and so rewarding. Thank you indeed!

Life is irresistible isn’t it? It must go on, we must find a way.

I’ve written too much, and I will not re-read. In the past I have read every phrase a dozen times at the very least, and the whole essay a dozen more to find the best word and the smallest mistake. So this may be a right mess!

Rejoice!

 

If you made it this far, thank you.

As always, you can write, and my iPad will read it aloud.

 

A thin sliver of plastic has repaired my outlook and restored my sanity.

I had spectacular vision, once. (There is a pun there, so faint that it will be missed altogether by all but the most astute if I don’t point at it.) My Optometrist was always most impressed and said that with spectacles (referencing above pun) my vision was significantly better than 20/20. Do you know, by the way, what 20/20 vision actually is? The top 20 refers to the smallest line on an eye chart you can clearly see at 20 feet distance, compared to the maximum distance at which a person with normal sight can read the same line … or something like that.  Odd, isn’t it? It sounds a rather messy way of measuring to me.   Until Easter I could read signs at long distances and the finest print (except for fine print, which of course nobody reads); but it all ended in less than a fortnight, replaced by fuzziness and double vision.

The Ophthalmologist (= eye specialist, although one almost needs a mouth specialist to pronounce it) had two things to say.
The expected: he concluded it was “probably systemic”, meaning whatever is wrong with me is also wrong with my vision, (in other words, no idea) and
The unexpected: he said he thought he could help.
He sent me down the corridor to the Orthoptist (= double vision specialist, a word that would be easy to say if you hadn’t first been practicing saying Ophthalmologist). The Orthoptist had me peer through a great many holes in various gadgets, and then took a flimsy piece of plastic from a sealed box, cut it to size with scissors, and stuck it on the back on my glasses. This curious film, less than 1mm thick, is the remarkable Fresnel Prism.  It puts double vision back together again. While it doesn’t solve my problem altogether – I still find much of the world too fuzzy, and occasionally too two-y – it does greatly reduce eyestrain and makes the unbearable quite tolerable.

You might have seen a Fresnel Lens if you have visited a Lighthouse. I remember when I first saw one, and in a rare moment of scintillating insight I actually understood how it worked.

Each ring of glass is a triangular lens or prism, all working in chorus to send the light from the lamp in a parallel beam far out to sea, greatly enhancing the intensity of the light. If a single lens had been used it would have been of impossible size and weight, so a series of smaller lenses are used instead. I now have a miniature fresnel prism on the inside of my glasses: many tiny, vertical triangular prisms lined up across the lens.

 

Without the prism I think I may have fallen into some sort of depression, I could feel my eyesight dragging me to a dark place. Perhaps the suddenness with which it arrived is a factor, but I find it much harder to accept than other problems. A bit like the flu, which always seems to me worse than a broken bone, vision problems are right inside your head; intrusive, unavoidable, overwhelming, horrible.

Yet again I find myself the beneficiary of recent innovation. Although  Fresnel built his lenses in the early 19th century, the PVC prism I have is a modern application. Every day I rely on technology to breathe, to propel my wheelchair, and now to see, that is only a few years old.  Some of it just a couple of years old!  I commented on this to my GP recently, saying that I thought that a decade ago I would be much worse off; and she added something like, “or not here at all”.  That’s true I think. It is astonishing to live today in a first world country, benefiting constantly from science and invention.

Rejoice!

When tomorrow arrived the ‘apointment-eve nerves’ I wrote about in An Easter Miracle? were gone. It had been a restless night, but the day dawned bright. An exhilerated mood grew as I made my way to the appointment, and as the bus crossed the picturesque  river land between the two sides of our city I felt euphoric. I heard my own voice in my head saying “I am Roderick, I have such and such, and I’m fine”. Corny, I know, but at that moment life seemed utterly under control and I was surging with vitality.

The Neurologist was somewhat less euphoric; in fact he was skeptical at best. But he did agree that my list of symptoms was a good match for Myasthenia Gravis – the condition I had come to think I had. (Including this astonishing one: an absent gag reflex. The ENT specialist discovered this a while back, and since then doctors have delighted themselves sticking those wooden spatulas down my throat and saying, “Well, look at that!”) There was a particular test, he said, that would be conclusive in diagnosis, and he was quite happy to give it a try. All this happened nearly a fortnight ago, and the Final Exam took place on Friday just past.

Despite the Neurologist’s caution in my earlier visit he began Friday’s session with a buoyant comment which I remember indelibly:

“It would be fantastic if it was Myasthenia, because it’s totally treatable”.

Single Fibre EMG testing is not as bad as it sounds.  The Dr puts a couple of needles in your arm, and later your forehead, and sends a current between them. The current pulses and changes in speed and intensity; and the Dr. manipulates one of the needles until he can isolate contact with a single nerve fibre.  Thirty ‘good’ results need to be achieved in each location, and the average of a component called “jitter” provides the answer.  But it did take two and a half hours; more than enough to give you the jitters.

The machine he used for this is a wonder to behold: it comes straight from the set of Dr. Who, but way, way back when Ian Pertwee was in the Tardis. The thing has a floppy drive, for goodness sake, and a prominent button marked DOS! Its a bit like the time-warp experience of climbing into a single engine Cessna aircraft and finding the interior of an EH Holden, complete with all that chrome trim.  This specialist is a bright, warm man, and it was good fun teasing him, mercilessly, about the antiquity of his machine – while wondering if something so ancient could really be relied upon….

I appreciated that he took the to explain it all to me, and showed me the figures as they emerged from his time machine (which has a printer roll, like a cash register!), and the table of normal results to which they were compared. I think he knew that I needed to be completely convinced about the outcome.

I can’t pretend that the answer was anything but despairing; even though I had tried to prepare myself in line with his skepticism.  During the long procedure I had talked with the specialist about the journey I had taken in convincing myself about this diagnosis. I told him how challenging it is for my wife (but I didn’t mention she is my Favourite) to continually face the unknown; more challenging than it is for me I am certain. For the first time I gave voice to my uncertainty about the future: the inability I have had in recent years to see myself beyond a couple of years ahead. I told him how a bright, long, alternate future had soared, phoenix-like, in my mind when I felt I knew what was wrong. He listened, and understood, but he said nothing at all to contradict my gloomy outlook.

The hours following both Neurology consultations were much the same: fear laden, depressive, angry (at what? who? Ive no idea), and senseless. Senselessness is the hardest by far.

I am immensely fortunate to have something in my character that is both sensitive and resilient. I can fall pretty hard at times, but within a day or three I seem to get back up without effort; time is enough to regain hope,  to find again all of my joy de vivre. I can neither explain this nor take any credit in it: I just know it will happen. I know it as a  sort of disconnected fact, even while feeling that all hope is lost for ever.

So after these turbulent weeks, I can honestly say that tonight I am fine with it all … nearly … mostly … almost. I am sorely tempted to say, “What if? If only……”, but that is such a mistake.  One thing I do fear is that I will ask myself, tonight, tomorrow, one day: “Why?”  Why the Easter Miracle? Why did I go through all this? What was this ultimately futile journey since the weekend of Easter all about?  Because to me the story, the unfolding, is all important.

I read a couple of weeks ago this intriguing line in ‘The Lord of the Rings’ (Which Teen Girl and I have been watching):

But being a cheery Hobbit he had no need of hope,
as long as despair could be postponed.                        – JRR Tolkien.

I can’t account for the hope I nearly always feel, except as an aspect of faith.  It is just there, by and large. Reliable, joyful, hope; is just there.

Rejoice!

 

Drop me a line, but let’s keep it bright!.

 

Last week’s essay was overgrown, and needed some heavy pruning, as is often the case. But I hacked away one paragraph too many, one that belonged on the vine, not in the virtual bin. The axed paragraph was the crux of the matter: why I wanted to write about loss.

Thankfully none of the replies to last week’s post contained these words: “I’m so sorry to hear about your loss, how awful etc. etc.”, or anything like it. I was relieved, because sympathy is of no value to me whatever. Empathy, now and then, is of some use, but sympathy reminds me of so much sticky red clay clinging onto a bogged truck. Donkey’s years ago in the desert I came across a grader driver who had driven across what looked like a small, damp clay pan; but turned out to be a soak. An unusual feature in a desert perhaps, but this one spot drained moisture from a wide bowl of small hills, something like quicksand I guess. The grader dropped so far that the driver could step straight out his door onto the red boggy clay.  I tried to drive around him – I needn’t tell you what happened…..    but I believe he had to leave the grader there for some weeks until it dried out and a bigger machine could be brought in.  I travelled the same way some time later and the hole in the ground where the grader had been was deeper than me! Sympathy is just like that to my mind: it stops you in your tracks, and only a great heaving effort will take the conversation upwards again, wrenching all involved away from the precipice of self pity.

So, sympathy is certainly not why I wrote last week.  There were two reasons. The first is that throughout the time I have been writing Rejoice, since late 2009, this is where I have come to figure things out. I write to understand myself, and my readers keep me honest.

The second reason is this: Loss is a dying art. It has become a taboo subject in today’s world of unending achievement and limitless progress, where we bust a gut to impress, sometimes deceiving even ourselves. Loss is a subject that is so overlooked that we have become illiterate; lacking both language and opportunity to observe our graceful defeat.

There are several ways I have tried to engage with loss; I share them here with any others who might also tread the downward path. And many do! To live is to loose, after all.

Here we go:

Denial. As useless as it is obvious. Every truth I deny remains utterly untouched by my denial. Like mozzies on a dark night denied truths will hang around as long as necessary, just waiting to sting you and suck your blood! Don’t bother with this one.

Sharing.  This doesn’t work so well either, in my experience. The human subspecies that will listen to your story attentively, (not concentrating instead on their own counter-story which just happens to be heck-worse), is critically endangered. I’ve not seen one in a while! A strange outcome when I do “share” is that I find myself talking down my own grief, reassuring the listener that it’s not that bad after all! I don’t understand this dynamic, although I have felt it often enough. Why do I need to reassure everyone that I’m just dandy?

Writing. I journal every day – in patches admittedly. I go well for months, and then I stop, and pick it up again days or weeks later (or months.…).  A valuable habit, it brings structure and reflection to each day. I try very hard to avoid whining in my private journal. Many years ago I did not understand this rule, and I had a good old whinge about a few things between the covers of my book. I re-read it a long while later, and was flabbergasted at the sorrowing, introspective tone I am capable off.  Never again.

Music. I love to listen to good music, almost always in the classical genre in which I was raised.  We have a lovely room with a wide view and a cracking set of speakers. Music seems to explore my soul. I still play one wind instrument too, the Shakuhatchi. It’s minor pentatonic scale is a beautiful, wistful and deep way to concede change. Rather than being mournful I find it prayerful. Music is momentary, the expression lasts only as long as a note. Paradoxically, acknowledging my grief this way, bound to the present moment, leads me often towards the greatest gratitude and joy.

Silence. There are two flavours: personal and corporate. It takes concentration to be silent, our instinct is to fill each empty space with something; our phones, screens, television, radio (my own favourite noise); but if I do concentrate on silence and concentrate in silence, I meet myself in the most reassuring way, and the person I meet seems whole and sound. It can take time, and it can take repeated attempts to quiet your own soul; but it is, eventually, reliable and profound

Corporate silence is deeply lacking in our world. In conversation with a pastor from our church this week he mentioned that the one element occasionally included in a service that invariably leads to comments and even letters of appreciation is silence. I think we need to be silent with others, but it is one of the most awkward things to achieve. I’m hopeless with empty spots in a conversation, and it was a long road to learn to sit with people in silence. When I used to meet with grieving families as a chaplain there were very few words I could offer that had more value than attentive silence. Silence: people do it poorly, churches do it even more poorly, we should practice this deep gift.

Encouragement. This is not something you can readily seek, but now and then a friend – or occasionally something more remote, like a passage in a book – will offer you a few words that have power to reshape your outlook, to lift your chin, to bring a smile again to your heart. Be patient, it will come.

Rejoice!

 

Tell me your story…..