The sounds of silence

In the months since I last wrote in my blog, I have spent a considerable amount of time in solitude. I’ve had to. An exacerbation of ME/CFS symptoms including migraine, dizziness, nausea and brain fog have made it essential. For much of January and February, I was rarely far from my bed. I struggled with any form of socialising and spent most of my days entirely alone. When my husband was home in the evenings, our conversation was reduced largely to the bare necessities.

Since then, I have seen a slow improvement, but have also weathered the relentless pain and broken nights that have accompanied the onset of a frozen shoulder. As a result, my blog has remained silent.

Silence. I’ve written about it before: https://ripplesinthewind.wordpress.com/2014/07/02/silence/

In that post, I made the point that silence is not empty. In fact, if we stop to listen to them, the sounds of silence can speak much louder than words because words so often get lost, falling over themselves in a cacophony of human jabber that communicates little and hence, paradoxically, is silent.

My words like silent raindrops fell
And echoed in the wells of silence

(Paul Simon, ‘The Sounds of Silence’)

We need true silence in order to distinguish one voice from another and hear what it has to say. Yet prolonged silence can be difficult precisely because of this. It compels us to hear voices that perhaps we would prefer not to hear. With only ourselves for company, we become subject to all the fears and distortions that can be dreamed up by the human mind, together with the worst (and best) manifestations of our own human nature.

Back in January, I picked up a book that had been left on my bookshelf a couple of years previously by a friend. I picked it up primarily because I was bored. I hadn’t the energy to write, draw or communicate. So, thinking that on this particular day I might at least be able to read, I picked up the book: Taken on Trust – the story of Terry Waite’s captivity in the Lebanon. It’s not a book I had read before. When he wrote it, I was busy having children. But the more I read, the more I became fascinated by the similarities and differences in our experiences. He spoke of the long days and nights in which time seemed to have no meaning, separated as he was from the world outside. He spoke of his attempts to exercise – walking up and down and round and round until the steps became miles – and of his sense of frustration when he was chained to a wall and could no longer do this. He spoke of living for months without books. No books! And here I was reading his book because it was the best means I had of holding on to my own sanity!

Towards the end of his time in captivity, he became seriously ill with  some kind of chest infection and it was then that he says he came closest to being overwhelmed by what he describes as self-pity. Initially, this surprised me. Up to that point, his freedom and personhood had been violated in so many ways that I didn’t expect illness to make so much impact. Yet it did.

Self-pity. I know what he means. I know it only too well. But the more I thought about it, the more I wondered about that word self-pity. In the garden of Gethsemane, Jesus is ‘overwhelmed with sorrow.’ Is that self-pity, I wonder? He asks his friends to watch with him. Is that self-pity? He prays that he might not have to face the end that he knows is coming. Is that self-pity? Or is it more about a deepening realisation of one’s own vulnerability and hence a very human need for help, support and protection? And if it’s about a human need for help and support, is having that need really such a despicable thing that we must label it as self-pity and strive to hide it?

The sounds of silence.

Voices that can echo so loudly with vulnerability and inadequacy that it becomes hard to distinguish between them. At what point does the cry of genuine human need become the cry of self-pity? Who is able to make that judgement? As a child once put it:

pain is lonleyness because know one noes what I feel

(From ‘In Times of Pain’ by Jane Grayshon)

Brian Keenan, in The Evil Cradling (his own account of life as a hostage in Lebanon), is a good deal more open than Terry about the horrors of being at the mercy of nothing but your own mind. With nothing else to occupy it, the mind can and does torture us with all manner of distorted perceptions. However, because his time in solitary confinement was limited, Brian is also able to speak of the enormous strength and comfort that he gained from the companionship of someone who shared his cell and hence could walk the journey with him.

Having someone with whom to share even a little of the pain makes all the difference. There have been times in the past few months when I have been overwhelmed to the point of tears by the warmth, kindness and respect of folks who have shown me that they care, even if they haven’t always known how to help. Just by their presence, they help hold the shattered fragments of my being together far more effectively than they know.

I wish I could be more profound in my spiritual life. I am still very much a child in my understanding of my faith. I have no deep thoughts, no great insights, no outstanding qualities. I am a very ordinary man chained to a wall and attempting to struggle through another day of boredom and uncertainty.

(Terry Waite)

To me, this says it all. Those of us who face such difficulties are not heroes and would not want to be thought of as such. We are just ordinary people living what has to be lived because it has to be lived. We don’t deserve admiration and we don’t want it. Nor do we want pity. But, at least for me, kindness and respect are like gold in a world where everyone from the psychiatrist and politician to the local quack seem to be clamouring with opinions about what is wrong with me and how I could be or should be living my life.

People talking without speaking
People hearing without listening

(Paul Simon, ‘The Sounds of Silence’)

In such a world, I am profoundly grateful for all those who have walked beside me. I would not be without them. However, I also know that there is a sense in which the journey can only be mine. No-one can walk it for me. That’s why I need the silence. Not just because I am sick or because my brain cannot cope with input, though this may be true as well. But because I need to be able to hear my own voice in order to find my way through. And because, beyond that, in the darkness, whether I hear it or not, there plays the silent music of hope, the gentle rhythm of grace, the fiery heartbeat of God inviting us to dance.

Hello darkness, my old friend
I’ve come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence…

(Paul Simon)

Disclaimer: I cannot say what was in Paul Simon’s mind when he wrote the song. The above is simply one interpretation of his words.

Colours of day

Among my Christmas presents this year were two colouring books. As a result, I have been rediscovering just how relaxing a hobby this is. Headaches have become a real problem in recent weeks – often triggered by even the smallest amount of ‘input’. Colouring, however, seems to be one of the few activities that does not exacerbate them.

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A picture from the Dazzling Patterns colouring book by Beverley Lawson

There is also something very therapeutic about filling a page with colour when the outside world seems to be filled with mostly grey and muddy brown.

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Octopus from Millie Marotta’s Animal Kingdom

I am using a lot of orange in this one, which is odd because I’m not very keen on orange. But it’s an octopus sort of colour and it most certainly makes a change from the relentless grey we’ve seen through October, November and December.

And now, even the world outside seems to have become bored with grey. In the last few days, the weather here in Somerset has turned cold and clear. Where other parts of the country have seen rain, sleet or snow, we have had almost unbroken sunshine. I took this photo yesterday afternoon, out on the Levels:

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No ice, no snow, no rain, no floods. Just the late afternoon sun, a bitter wind and a beautiful blue sky 🙂

‘We’ll never see it again, I shouldn’t wonder. You may have blotted it out and turned it dark like this, for all I know. Nothing more likely. But I know I was there once. I’ve seen the sky full of stars. I’ve seen the sun coming up out of the sea of a morning and sinking behind the mountains at night. And I’ve seen him up in the midday sky when I couldn’t look at him for brightness.’ (Puddleglum, in response to the Queen of the Underland, in The Silver Chair by C.S. Lewis)

No need to say goodbye?

‘Remember, remember, the 5th of November…’

Whether it’s gunpowder, treason and plot, whether it’s the saints of old, whether it’s members of the armed forces, or whether it’s simply those we have known and loved, early November in the UK is traditionally a time of remembrance. It’s the time of year when the veil between our world and the spirit world is said to be at its thinnest. Hence the spectres of Halloween. It’s also a time of preparation for the darkness and frugality of the winter season (in a world without air travel and supermarkets) and for celebrating the awe and beauty of…

Autumn trees

Autumn leaves

Death.

In an odd sort of back-to-front way, it’s also a time of new beginnings. However you look at it, what was is passing away. The long, carefree days of sunshine, growth and wellbeing that the summer brought us are fading into the darkness of winter. Those who celebrate the Pagan festival of Samhain often see this as a time for letting go.

This is all very interesting to me because it was at just this time of year when I caught the virus that was to make me seriously ill with ME. On 31st October 2001, I spent the day with my family on the beach at Burnham-on-Sea. That night I fell ill and nothing was ever going to be quite the same again.

Over the years since, this anniversary has faded in and out of consciousness. The first year it was particularly significant, marking the end of what had been the most difficult year of my life. I remember facing November very much in the spirit of a new beginning. I had hope that the coming year would not be as hard as the one I had just been through and a new confidence that, even if it was, I could now live through it. There was some fear of the approaching winter, because of the viral illnesses that so often come with it, but there was also a new sense of inner strength.

Three years later, I chose to celebrate the anniversary by doing something I’d not been able to do since falling ill. I went to see a film at the cinema. Since then, there have been years when I have marked it and years when I have not. Last year, for example, the day passed without my even noticing. On the whole, however, the movement from October to November has come to have far more significance for me than January 1st has ever had.

This year, for some reason that I feel unable to fully explain, I felt an overwhelming desire to go back to Burnham and say goodbye – goodbye to the Ros that once was. It’s not the first time I have felt this. Our church holds a memorial service at this time of year to remember those who have died. Two or three years into the ME, I remember having to fight the temptation to write my own name in the book of remembrance so that it could be read out during that service. It wouldn’t have been appropriate, of course. I knew that. But I so wanted to do it. If I could have held a funeral for my old self, I would have done. But I didn’t know how and there was no-one to help. On the rare occasions when I voiced such feelings to others, I was met with complete incomprehension: ‘But you’re still you. You haven’t become someone else…’ or ‘But this is not forever. You will get better…’

Well, 14 years on, it’s looking pretty much like forever to me. Even if my health were miraculously restored tomorrow, I wouldn’t be the same person that I was back then. My body has aged. My children have grown up and moved on. My life and my relationships have been changed irrevocably. In that sense, the losses have been very real for all of us. Of course, there have been gains, too. But the fact remains that I will never climb the mountains, build the sandcastles, watch the films, share the hugs, or do any of the countless other things with my children that perhaps we might otherwise have done, had I not been ill.

So, this year, I decided to do what (in face of such complete incomprehension from others) I had never quite dared to do before. I decided to go back to Burnham and say goodbye. Properly. Perhaps it was the fact of not having been so well that triggered the desire? Perhaps it was something much deeper? But one warm, sunny afternoon towards the end of October, I went.

I drove myself there – a route I haven’t driven for 14 years. I wasn’t even sure that I could do it safely. These days, I rarely drive more than 30 minutes from home and this journey was to take me 50 minutes each way. However, I felt relatively well – better than I’d felt for some weeks – and the inner prompting was so strong that backing out just didn’t seem like an option.

When I arrived, I drove down to the lighthouse end of the beach and parked on the sea front. I don’t remember much of that last fateful day, but I do remember that we walked out to the lighthouse and that I was carrying my youngest daughter because she had come down with a fever while we were out. We didn’t know it at the time, but I would never do this again.

This time, I walked down on to the sand and looked at the lighthouse for a few moments, remembering. Then I stooped down and wrote ‘Goodbye Ros’ in big letters in the sand. As I wrote, it occurred to me that the real meaning of those words is, ‘God bless you, Ros’ and that seemed like a fitting parting. I thought again of that last day on the beach in the autumn of 2001 and remembered how, that summer, I had run with a friend’s dog for a mile across a beach in Northern Ireland – running just for the sheer joy of being able to run.

Suddenly, to my complete surprise, I was sitting on the beach sobbing. Not with pain, but with joy. I was overwhelmed with it – a deep, deep thankfulness for all that those 37 years of good health had given me. It was a powerful moment. A liberating moment. A moment of pure grace. For 14 years, I had not been able to remember those days without pain. Indeed, I had learnt not to remember them for precisely that reason. Suddenly, I was remembering them with joy. It was a special moment. I had not come expecting such a gift.

After that, I wrote two more words in the sand: ‘Thank You’. Then I sat for a long time just looking out to sea. And then I wrote, ‘Welcome to all that I can now be’.

Remembering.

I used to think loss was something that one was supposed to get over. Why do we punish ourselves with that thought, I wonder? Anyone who has ever been there knows it’s not true. As I have discovered, learning to live with loss is learning to live with just that. Loss doesn’t go away. Rather, he’s like the most annoying of good friends. You know the kind of people I mean. The ones you get to know really well. The ones who think they can turn up on the doorstep quite unexpectedly – often when you least want them.

On Burnham beach, as on many other occasions in the past 14 years, I discovered that it’s only when I open the door, welcoming him in and even embracing him, that I find Grace, smiling broadly, sitting at my table, too. That’s why I needed to say goodbye.

How are you?

People who know me well will have heard me say that this is a question I have long hated. The reasons go something like this:

Friend: How are you?
Me: (Actually, I’m ill. Still. In fact, this week, I feel crap. Do you want to know this or don’t you want to know this? If you don’t want to know this, why are you even bothering to ask?) I’m OK. How are you?

I hate it because, for me, it’s a question that lacks honesty. From time to time it’s been suggested to me that I’m reading too much into this. It’s a polite greeting. Nothing more. So why don’t I just treat it as such?

Well, that’s a good question. Where I live, for example, it’s quite common to be greeted with “Alright?” to which (or so I am told) the correct response is “Alright?” It’s an essentially meaningless exchange along much the same lines as “Hello”. We might as well say “Fluzbot” or something, except, of course, that “Fluzbot” is not a word any of us are familiar with, which makes it slightly risky. After all, it might mean “You swine!”. You never know! Usually, however, expression and tone tell us all we need to know. It’s like two dogs wagging their tails:

A: (Smiling) Fluzbot? (I’m friend not foe!)
B: (Smiling) Fluzbot! (Me too!)
A and B: (Good. That’s settled then.)

The intent is simply to put one another at ease.

So far, so good. However, it seems to me that the “How are you?” question, at least among friends, doesn’t operate on quite the same level as this. Rather, it has a range of acceptable responses from “Fine, thank you…” all the way through to “I’ve had a rotten cold this week…” That’s why it’s problematic. Whilst there are a range of acceptable responses, a response is acceptable only in so far as it is perceived to be “normal”. It’s “normal” to be well. It’s “normal” to have a cold and get better. It’s “not normal” to live in the shadowy lands of bereavement or chronic illness. These are not the stuff of polite conversation. They are disturbing places. Places we would rather not go. You can tell this by the way the question may change when a person is known to be recently bereaved. Those who want to show they care will ask it differently. It’s as if the inhabitants of this shadowy land need special acknowledgement. They are “not normal”, so they must be specifically invited to speak. Even when they do, they still risk dismissal and they know it. It’s a risky business emerging from the shadowy land.

The shadowy land. In depth psychology, the “shadow” is representative of all the things about ourselves that we would rather not acknowledge, but instead seek to hide or destroy. In its worst form, this is seen as being worked out in events such as the Holocaust, where the alien, the sick and the criminal were systematically dehumanised and destroyed. Rightly, we are shocked by such events. We dare not believe that we are capable of such things. And yet… yet there is a very real sense in which we continue to push those “other” from us into the shadows. The “migrants” are just one example. LGBT folks would be another.

Back at the beginning of my illness, the very first time I went out in my wheelchair, I had the following conversation with someone I knew:

Me: Hello!
Friend: (With apparent concern) Hello! What on earth has happened to you?
Me: I had a virus and now I can’t walk.
(Short silence)
Friend: (Looking at wheelchair) Well, don’t get too used to it!

It’s a conversation I’ve always remembered because it underlined for me the reality that I was now facing. In her world, people with viruses got better. Hence the only plausible explanation for my use of a wheelchair must be that I was getting some kind of kick out of it. In other words, that there was something not quite right about me. Hence in just those few brief words she informed me of my future place in the world. Life in the shadows had begun.

Interestingly, it was only this morning that the full significance of the words she used struck me. The fact is, I have “got used to it”. I have had to “get used to it”, as has my family. Not getting used to it has only ever been an option for those the shadow has not touched.

How are you?

The question invites and expects answers that fit in the safe, comfortable world of normality. When most folks say, “I’m fine, thank you”, the chances are that at least some of the time this will be true. However, when I say it, it’s never true. So, effectively, the real me disappears into the shadows. Repeatedly. On the other hand, if I do reply more honestly, I risk the averted eyes, the shuffling feet or the cheery brush-offs that tell me that the shadows is actually where I belong. That’s why I hate the question. Day after day, week after week, month after month and year after year it acts as a continual challenge to my right to exist. And if that sounds overly dramatic, I don’t care. I am weary of it.

So what’s to be done? Well, frankly, I don’t know. No doubt, the question will continue to be asked and life will continue in the shadows, where those of us with chronic illnesses will plot and scheme for the destruction of the rest of humankind… 😉 Alternatively, we could try the court jester approach and attempt to reclaim the question through humour:

Friend: How are you today, Ros?
Me: (With an evil grin) I’m sorry. My brain is a bit slow today. Could you repeat the question?

More suggestions welcome…

A new visitor

Whilst enjoying the late sunshine in the garden this afternoon, I noticed a visitor I’d not seen before:

Gatekeeper butterfly

Gatekeeper butterfly

Rather than just fluttering by, she stayed for quite some time. Her attention had been caught by my flowering oregano. I’ve not grown this before. Thyme, yes. Oregano, no. However, it is also proving to be a favourite with the bees:

Honey bee on oregano

Honey bee on oregano

I had anticipated a certain amount of interest from the bees. However, I hadn’t expected it to be quite such a favourite. Clearly, oregano nectar is something a bit special. Food of the gods – or so it would seem. So now I have a little corner of heaven in my garden 🙂

Juggle struggle

About a month ago, I was pondering life, as one does, and decided I would try to learn to juggle. I wasn’t sure how well my brain would cope with this. Speedy processing hasn’t been its strong point since I’ve had the ME. However, nearly 14 years on, I thought it might be good for it to learn a new skill – especially a physical one. I also thought juggling might be a good way of giving my body a little extra exercise, since it uses the arms rather than the legs.

As far as exercise is concerned, my plan seems to be working. Juggling definitely increases my heart rate. As far as learning a new skill is concerned, things are looking rather less promising. I mean, you’d have thought the balls would be delighted to be rescued from their unfortunate fate? You’d think they would rush into my hands in gratitude, rather than suffer yet another blow to the head? But no. I cannot seem to convince them to give up their unwavering attraction to the floor. They are loyal to the end.

Nonetheless, my efforts seem to be providing plenty of entertainment for the rest of the family. I am told that the expressions on my face when I began this project were a picture in themselves. Clearly, getting my brain to think about something it wasn’t used to thinking about involved a lot of grinding and clanking of some very rusty gears and cogs. This grinding and clanking had scarcely begun before more well-oiled minds began to apply themselves to the task. Indeed, my greatest achievement so far is teaching my daughter to do this thing… with the result that my already accomplished husband is now refining his skill so as to stay one step ahead. Like I said, hours of entertainment all round.

Meanwhile, my own efforts have not been entirely in vain. Progress is slow, but it’s happening. My main problem at the moment seems to be persuading my (non-dominant) left hand to let go of a ball once it’s caught it. Having persuaded it to do that, there’s then the small matter of persuading it to throw said ball rather than just dropping it. I’m getting there, but progress isn’t helped by the fact that my brain will simply give up after 5 minutes or so of practice. More than that, when adding each new step, I’ve discovered that it can only be accomplished once or twice first thing in the morning and then can’t be practised again until the next day. With those kind of limits, it’s been something of a surprise that I’ve managed to make any progress at all. Yet I have. The brain is a remarkable piece of machinery.

Anyway, since I’m still a long way from being sufficiently accomplished to show off my skill, I thought I’d leave you in the hands of an expert. Perhaps, one day…

All my own work

Life has been full this past couple of months, so it’s been a little while since I last blogged. During that time, the garden has burst into life. After a cool spring, the warm June sunshine was just what was needed. The tomato plants, which had turned blue whilst hardening off in May, suddenly woke up and decided life was worth living after all. The bean plants, which had been doing not a lot since April, made a sudden rush for the top of the bean poles looking for giants. And the courgette plants made their usual bid to take over the entire vegetable garden by the end of the summer. On the present showing, their success looks to be pretty much guaranteed.

This is how things looked last weekend:

Vegetable garden

Vegetable garden

And here are today’s pickings:

Vegetables

Vegetables

Since the second week of July, we have harvested 18 courgettes from three plants. I knew from previous experience that three plants were likely to produce far more than we would really want to eat. Last year, we managed quite happily with just the one plant. This year, I was aiming for two. However, despite the accident with the greenhouse, I ended up with three healthy young plants. So, not having the heart to destroy the spare one, I eventually planted it out with the others. I may yet live to regret this…

The bean plants have only just started producing. From what I remember, they are later than last year, but now have many more stems and flowers. (Something to do with the original growing tips being damaged by wind and/or aphids). The lettuce is one of four that I planted in the corner of my new herb garden. We’ve eaten one other and I have one remaining. The fourth was lost to slug attack. The nasty little blighters waited until I was on holiday at the end of June and then cut it off at ground level and left it to rot. The tomatoes have yet to ripen, but we are currently picking redcurrants and blueberries from plants that I’ve had for a few years in containers. The blueberries are easily my favourite of all the garden produce. They are so much nicer than the ones sold in supermarkets.

Those with sharp eyes will notice that I also have flowers in my vegetable garden. This is mostly because I had some alyssum seedlings left over that I didn’t know what to do with. Something tells me that my Dad would not have approved of this flight of fancy. He had a much more ordered approach to his gardening. However, I have since found out that it was A Good Idea. Like coriander (which I have in my herb garden), alyssum is favoured by hoverflies and lacewings, the larvae of which are very partial to aphids.

It seems Viola also thought flowers in the vegetable garden was a good idea, so she paid it a visit all on her own:

Viola

Viola

Needless to say, she has been allowed to stay, mostly because I like purple.

The vegetable garden was started by my daughter some years ago and has been maintained more recently by my husband (mostly). It’s always been kept small because his time is limited and we knew that the ME would severely limit how much I could contribute to its upkeep. This year, it is a little larger than it has been in previous years because the bean, tomato and cucumber plants were so squashed up together last year that it was impossible to get between them to pick anything without indulging in the kind of acrobatics that my body just won’t do. I also wanted space to create a small herb garden, partly for the benefit of the bees. With my energy levels increasing, I thought I could manage this. However, I still wasn’t thinking in terms of looking after all the vegetables myself.

Therefore, it’s been a huge source of joy to find that I have been able to cope with all the planting, watering and weeding myself. I’ve taken it very gently; restricting myself to an hour or so at a time and taking a small stool outside to sit on whilst planting and weeding. But I’ve done it. Slowly, but surely, I’ve produced a vegetable garden. Of course, I can’t really claim it as ‘all my own work’ since Duncan dug it all over before I started and I cannot provide either sun, rain or insects. Nonetheless, it feels good to be able to look at it and say, ‘I did that’. I sowed. I planted. I did what needed to be done to help the plants to grow and thrive.

It’s also been good just to be out there amongst the growing things. Being there breathes peace into my soul.

Meanwhile, in another part of the garden, the French marigolds that marked the beginning of this venture are also thriving. Despite my predictions to the contrary, the slugs and snails have not won:

French Marigold

French Marigold

This makes me happy; and not just because of my Dad, though he was the reason I planted them. It’s much more about survival against the odds; about hope; about becoming. In them I see a dream made real. And I find that hugely encouraging.