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Forward Looking

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

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A current Pyrography project

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!

 

Vision Splendid

Vision SplendidVision Splendid 2

If you made it this far, thank you.

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

The Remarkable Fresnel Prism

 

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.

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The Lighthouse lenses designed by French physicist Augustin-Jean Fresnel

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!

And Another Thing………

Something along the lines of ‘full disclosure’ compels me to add the final piece of the Easter story I have been relating.

The condition I believed I had, but now conclusively don’t have, has a characteristic symptom which I omitted to mention: double vision. Fatiguable Muscle Weakness shows up in the fine muscles that coordinate vision, and the ability to ‘converge’ both eyes to the required length of focus is impaired.  So the optometrist told me. When I first developed my theory of self-diagnosis (never, ever do that!) I must have thought this was a bullet I had dodged. By the time I wrote An Easter Miracle?, three weeks ago, my vision had deteriorated significantly, but I didn’t include it in the story.  When I wrote last weekend I ignored it once again, which I assume was simply denial.

I generally read for an hour or two at night before lights out, and I like to read a couple of books at a time, often several. I’m not a quick reader, despite having done the all-the-rage speed reading course in the late 70’s, but I have read widely over the years; it’s an essential part of life. Soon after Easter I noticed I was “closing my book” (which sounds more poetic than turning off my Kindle), sooner than normal, but thought nothing of it. In mid May was still reading for an hour at a time; and less than a fortnight later I was struggling to read three paragraphs. I’ve found myself using one eye at a time for the better part of every day since then. I have these semicircles of black cardboard to put inside the frame of my glasses all over the house; I put one down and cant see where it’s gone so I make another one!

If you happen to have access to a wheelchair may I suggest the following experiment: Make a cup of tea, properly filling the cup, with properly boiling water, and then carry it in one hand while you propel the chair to the other end of your house, preferably through at least one closed door.  The proper technique involves changing which hand you hold the tea in according to which hand you need free to steer the wheelchair as you swerve around the furniture.  Not spilling a drop, obviously. Now, repeat the course with one eye covered. Finally, if you have passed the test so far, translate this whole exercise into a supermarket aisle with people walking in both directions,  plus trolleys, plus a child or two. Plus an elderly customer with a walker. The hot tea is replaced with a basket on your lap containing a list of things for you to find on the shelves. Having tried this I now have a  strict rule: two eyes must be used when driving in public.

I can’t down play the effect this has had on me; It’s not a case of making it humorous or dismissing it with a clever turn of phrase; this a disaster. Fortunately my vision is very rarely double; but it is quite blurred often and the eye strain when using both eyes at once is nauseating. I’ve rapidly learned all about the ‘Accessibility’ features on i-Things and computers, zooming in to get nice huge font sizes. I’ve discovered that some Kindle books are available with an Audio Narration, and that the words (nice, large words) are automatically highlighted as the voice reads them, and the pages turn by themselves.  It’s terrific! … if that’s the way you have to read. One of the hardest things is looking at people’s faces during conversation. The absolute hardest thing is unpacking the dishwasher: the constant change of focus is dreadful.

At the very same time that all this has been going on I happened to have another project of quite extraordinary proportion: I spoke to 1.2% of the world’s population. 60 million people around the globe heard my voice, briefly, on BBC radio. That’s quite a startling number, wouldn’t you say? I had submitted a question to a science programme, and they asked me to record it in my own voice. They included my recording in the programme that went to air, and they told me the size of their audience.  All of which just goes to show, once again, that life is a mix of the most amazing elements, highs and lows, grand and minute, exhilarating and tedious. It has taken quite some time to type this, with one eye, and a good big font; and that’s all there is to say. No more re-reading, no more checking for mistakes. Done!

Rejoice!

 

 

The Answer

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.

3_pertwee640The 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!.

An Easter Miracle?

This is exactly what happened, without embellishment or exaggeration, told as best I am able.

On Easter Sunday, on our way to church, Teen Girl announced without emotion,

“I found my phone”.

Nobody else in the car was without emotion right then, because the lost phone had dominated family dynamics for three long weeks, ever since the school fete.  No less than two (2) family members (adults both) had come back empty handed from “thoroughly” searching the car, and yet here the phone was, in the side pocket beside the seat that Teen Girl habitually occupies.

The relief shared by all was manifold, because this special little phone, which has the photos of five family members on five buttons, nothing else, has been key to expanding Teen Girl’s world this year. She now walks safely to the park and back, keeping in touch with us when she feels the need.  Or, when we do.

At this point my Favourite Wife declared her hand:

“I’ve been praying for an Easter Miracle, this is it!”  

Whether or not a phone found exactly where someone left it, and where nobody looked, is in quite the same class as The Resurrection was a thought that briefly occupied my cynical mind; but an altogether more worthy thought quickly replaced it.

“I think I know a better one”, I said.

Until that precise moment I had not recognised the timing of a personal sequence of events which, to my mind, comes much closer to the category of Resurrection.  See what you think…

Late in March I had been to see the Neurologist for an annual appointment, and a change I was experiencing in my ability to push the wheelchair led him to use the descriptive medical phrase, “Fatiguable muscle weakness”. These three words, as I began to understand them in the following week, were an absolute revelation. Fatigue was a word I had often rejected, because I always feel sharp and energetic; and muscle weakness had been regularly rejected by the specialists because I am still surprisingly strong on examination. But when combined these words are used to describe the function of the junction between nerve and muscle; and how it can work well once, twice, a few times, and then rapidly fade.  After eight years I had, at long last, an understanding of the process that has been affecting my mobility and breathing and much else. I suddenly understood why I can do some things well, and others not well at all. It was extraordinarily helpful, and immediately allowed better management of daily life.  But this is not the Easter Miracle.

If you search online for this phrase it points to a particular condition – a treatable condition! – which I had often been tested for in the past, without result. As I read about this in the week before easter I came across a curious symptom of the condition which I can remember doctors looking for in the past: a change in the shape of the eyelid. Straight to the mirror I went, and I was startled by what I saw, or at least what I thought I saw. By Good Friday I was convinced; and so began a tense mental tug-of-war balancing the possibility of treatment with the obvious pitfalls of self diagnosis. The stakes are high. Throughout the last eight years, to be very candid, I have never been able to see myself any more than about two years into the future.  It sounds morbid I’m sure; quite foolish perhaps, but the spectre of Motor Neurone Disease is tenacious. Small, incidental phrases that doctors use stay with you.  Once a neurologist assured me that I categorically did not have MND … “now ….. but whether we can rule it out in the future I can’t say”.  You don’t forget a comment like that.  Another said, while doing one of many nerve conduction studies with wires and needles, “It’s funny you know (I wasn’t laughing); you can do this over and over again and find no degeneration, and then one day, there it is”. And so with gradually increasing dependance on mobility aids and then mechanical ventilation, and with a complete absence of medical opinion, I have been unable to loose this sense of “a couple of years” as the time frame for my life.

But as the Easter weekend progressed I began to see myself living a decade, two decades, three!  I could see my grandchildren at ages that I had subconsciously not allowed in my thoughts. I saw myself at home, with my wife and family, growing old. I was immersed in euphoria, relief, joy!  And yet …… this was nothing more than self diagnosis. My thoughts became agitated in the weeks following Easter, swinging from excitement one day to the sheer foolishness of second guessing the medical profession the next.

Tomorrow, at the neurology clinic, I may just find out.
Perhaps.
I’ve been through this appointment-eve trial of nerves so often in the past; it’s no fun. I probably won’t sleep much tonight, but who knows what the new day may bring?

Rejoice!

The Best Line I’ve read this week…

Before each morning has become too cluttered I take a red pen, preferably a red fountain pen, and copy a quotation into the top of a fresh double page in a journal. I look for insight wherever I read, and the chosen thought becomes a meditation of sorts for the day ahead. On a good day I will find a moment now and then to continue evolving my thoughts; and at day’s end, often heading towards midnight, I complete my account of the day past.

Whether because of writer’s block or existential anxiety, Sunday by Sunday I have little to pen for Rejoice!. Instead, now and then, I might share my journalling week’s Best Line.  Beginning with:

“It is not madness, lady”, he answered,
“for I go on a path appointed”.

 J.R.R. Tolkien, The Lord of The Rings.

So speaks Aragorn, Heir to the throne of Gondor, to the lady Éowin, niece of the King of Rohan, on his resolve to pass through the Paths of the Dead. Lord of the Ring readers alone will know, or care, what all that means.  But it is a marvellous book, filled with all manner of deeply considered thought.

To me this line is full of resonance. I wonder what replaces the sense of calling in the life of an atheist? It is not at all unique to Christian thought that there is a purpose to life; a purpose that is in some way marked out, appointed, destined. I find it inescapable: eventually through all life’s ups and downs I return to a profoundly settled sense that I am where I am meant to be.  In that light the decisions I reach and the path I walk feel complete.

Rejoice!

 

Have you a good line I can borrow?


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