It's hard for me to believe that people who read very little (or not at all in some cases) should presume to write and expect people to like what they have written.
- Stephen King
- You sing as if you know water. -
- Music and painting bandaged soul-holes. -
- Soon the wise chose cowardice, a way of life: not hearing, not seeing, never asking, because sound, like dreams, could cause death. -
- In dust, an outline, a grooved, leaf-shaped scar. 'Every crevice contains a story. Every story points north. -
- Never trade a name. Trade in everything else, but not a name. -
- He can no longer see the small things. -
- They had turned old stories into songs without words. -
- This is how we lose the country, one child at a time. -
- He understood that as long as there was enough to move the day, beyond a grumble, people really didn't care to know why their lives had become harder. -
- Words are so small. They cannot show the womb of my heart. -
The Hypermobility Syndrom Association is asking for people who suffer from a rare condition to spread the world that today is Rare Disease Day. Through out the day HMSA will be putting stories up on their website.
Today I'm reposting an old blog post on living and writing with Hypermobility Syndrome, fibromyalgia both of which have impacted my autonomic nervous response.
I have found myself in an unusual place: am I too happy to write anything decent? Maybe to dig into the soul of the characters requires me to be on the brink. Each sentence I type looks terrible. The first draft of anything is rubbish, I say. But deep down I know there is rubbish and then there is unsalvageable crap.
Perhaps happy is the wrong word. Simply not dwelling in the gloom. For it is true, the fear is mostly gone. Nor does the shadow’s whisper cloak and tug, causing a war between what I must do (and did) and what the whispers taunt: just give up. The physio appointments, the meds, the exercises, the tape all feel a part of life rather than another burden to cart through the day. I am lighter now, despite what the scale reports. I no longer carry the guilt of feeling so heavy, so unenthusiastic, despite the fact that my life was, and still is, a full one with a man, a dog, the chickens, two healthy and intelligent children, a house, a lovely garden and plenty for all to eat.
I used to sink into the words, each one typed with great effort yet knowing they were a gift. I genuinely did not know during those dark days if I’d make it to the end. Despite the fact it was a short book. A book that began with grand plans and shrank until it fit into a single day. This Day. Because maybe if I negotiated with the fates even I could get a character through single 24 hour span. That was it. A goal. Finish this and make it the most beautiful thing I’d ever written. It might be your last.
The other day I caught up with an acquaintance at a children’s party. We hadn’t spoken in some time. She asked about the outcome of various projects Short Story Day Africa had on its plate in 2013. Yes, I told her, those anthologies did get published. Yes, they do seem to be well received. Yes, I am pleased.
‘And your book?’
‘You look better. You’ve had a wonderful year.’
I looked at her and nodded. This is true.
‘You seem happier.’
I paused. Then said, ‘It is easier to smile when in less pain.’
Everything is easier in less pain.
‘Are you better now?’ many people have asked me since school reopened mid January.
How do you answer such a question about a chronic degenerative condition, with two other chronic issues added on because…Because.
True, the rib injury made everything worse than the condition actually should be. The torso, grand central, is connected to everything and knock on effect, knock on effect…is better. Not better as in all fixed. But better than before. It is also notable that my grip has come back. Some things have healed. I no longer ask someone else to cut my dinner. I can turn a key in the car without bracing for the pain. I no longer bite back tears each time I shift.
Yet my collarbone keeps popping. Three years ago this was never so. It started about a year ago. It is getting worse. Then it gets a bit better, then a gnome settles back down on the flesh, a constant weight, and traces in the invisible bruises which are more tender than the blue and black marks I routinely sport on my shins. But it doesn’t hurt as much as my forearms did three years ago. Two years ago. 18 months back.
So is this better?
My knuckles ache in ways they have not before. But as I sit here and type this, my lower back feels fine. I can sit with ease. This is better than this past June. It is better than this past December.
The blue tape has decreased the pain. On some days so much that I grow overconfident, start to believe it was only a bad dream. Then it peels off and reality creeps back. Yet, knowing that there are solutions, that there are ways to cope, life seems manageable. Easier. Less of a fight. Daughter breaks an arm? We’ll be fine. I didn’t pause at scooping her up, carrying her into casualty, even though I’m not supposed to lug around heavy weights. Never once reconsidered sleeping overnight by her side in an inadequate chair. Nor did I fear the price I’d pay for such a stunt. Two days after the event I was feeling as well as I had felt before the incident. Two years ago a night like that would have left me in extra pain for weeks. Instead, I was free to focus on her.
‘Why are you still wearing the braces?’ asks one woman as I fetch my daughter from school. ‘Shouldn’t you be better now?’ says another as I went to take my morning walk. ‘You are starting to look like a rag doll, with all that tape. Surely you must just heal,’ states a woman who dropped around for a cup of coffee.
What is it you want me to say for you? I want to ask.
In the past I’ve said to people, ‘There is no cure.’
‘You can’t say that,’ most have replied. As if being practical is now on par with pessimism. In the past I’ve added, ‘Of course science is always making strides, but for now, yes, sorry, it is what it is. But the universe is welcome to surprise me.’
‘You mustn’t give up hope,’ so many say.
I blink. Or nod. Or say nothing. What I want to say is: Let me tell you about hope. False Hope. This False Hope whispered on promises, the tantalising gifts on the tongues of magic bean pedallers and optimists afraid of crushing a person with the truth. False Hope arrives prettily, dressed in ribbons, packaged like a gift. It reaches out and rips open the boxes where a person stored all the things they tried to tell themselves they didn’t really miss, that life is now fine without. False Hope dangles these past dreams and pleasures in front of the face. Suddenly it all seems so real, so possible, so close.
Then the months come and go, then the year and despite it all a person with a chronic degenerative condition realises that they are in actual fact further away from those dreams and pleasures than before. The shadow descends, seducing: stay in bed. You’ve failed. Sleep now…why bother. Safer here.
It was the woman in red glasses who set me straight. A meeting with various medical professionals who during a debate over how all these various ills interlinked, began to talk directly to me. ‘People always seek for a cure. Ask all the questions. Try to see if what they are being told is right.’ She stroked the back my hand, gently. Eyes stayed with mine. ‘There will eventually be acceptance. That is when you learn to cope. To live your life.’
A few weeks later, another turning point. My physio gave me a quote from a medical journal. It is the words of a boy living with a chronic cardiac condition ‘Through the little deaths of illness we learn and grow. Finally you discover that you are responsible for your own self alone.’
Since then I’ve held False Hope as far away as society will allow, and simply got on with it the best I can each day. This hasn’t stopped the questions. In fact, in the past month I’ve yet to go a week without hearing, ‘Aren’t you better, yet?’
In the past two months I have days where I have manage to load and unload my groceries by myself. Where I take a pan out of the oven – confidently – without the aid of a wrist brace. (The braces foolishly, or otherwise, keep getting tossed off due to the summer heat and skin irritation.) In 2014, I have started to train harder at the dojo. I managed to walk 14K on a trail. I’ve played games of Kubb. My swim stroke is stronger, smoother.
There was the day when I had to talk to the store manager about packing too many groceries into my small shopping bags.
There have been days in this new year where I have taken the minimum medication.
There are days where I have taken the max.
Week by week, accomplishment here and there, the warmth of summer, the strength of my thighs, the delight in taking part of family games and outings have all added up. I am gaining ground, ahead of yesterdays, yet it is still less than once upon a time. Yet my mood is better. Less panic. More practical. ‘You are living your life, now,’ my physio said. I sped through the first round of professional edits faster than I believed possible. There was no sign of the dreaded burn that feels as if it is shredding the tissue underneath the skin.
Then the other day I picked up a tube of suncream, the same tube I picked up the day before and the day before that. It is the same brand, the same packaging, of daily suncream that I’ve used on my face since my late teens. Yet that day, unlike any day before, when I squeezed the tube the left thumb bent too far back. The pain so great I didn’t even notice that I’d also over extended the index finger. Well, you don’t need to type with your left thumb, I’d said and tapped at the space bar with my right.
Later that day the left index finger began to complain, go numb. Later still, while gloved up and lightly punching a bag another finger began to nag. A tap on the keyboard, a tap on the mouse – the tips of the fingers are now bending easier than they’ve ever bent before.
This is new. Before too much time with the mouse, too much time at the keys it was the ligaments further down that were being irritated, zinging into the wrists and forearms by press-press-press. But now sealing a ziplock, pressing down on the toilet’s flush, plucking a coin from a purse, toothpaste – have all started to become tricky. I find myself recalling a finger splint I’d seen mere months ago. I’d thought, at least I’ve never needed that.
Tap-tap…I type this. Numbness slowly crawls in. Soreness where I’ve not felt sore before.
Is it a big deal? Maybe it will go away. Perhaps it is only a fluke.
Friday someone on an HMS board typed: Does this get worse with age?
I think of the doctor that spent our first five minutes of acquaintance by listing off various challenging and – in some cases – lethal conditions. When he’d finally finished he said, ‘What do all these things have in common?’
‘Ageing,’ he’d said as if this was ground-breaking news. ‘All these conditions are brought on by ageing. Even now, your body is succumbing. Science is already studying the genes that causes it, but until there is a cure, we will all die and most of us will do so because of the consequences of ageing.’
This is true. Not a single human being has yet to survive the toll of living.
I’d sat there in that doctor’s office and thought of an article I stumbled across about a month before. It was a piece by James Rhodes, the title of which came from a famous Charles Bukowski line: Find what you love and let it kill you.
I mentioned the gist of this article to the doctor. ‘Yes, and you must do it. So if you want to row, then you must do it. But if you want to write you may consider following your physio’s advice. Now lets see if there is anything else we can do to help.’
The aches and pains go up and down. Yet my writing relationship with that short book – that goal – is almost at a conclusion. Another few rounds of edits and the time for the writer to play with the words is done. Here I am and I haven’t physically lost the ability to type. With this new gift of time, I’ve kept going. A short story escaped during a crack of time this past spring. That other 8,000 words that gathered together before the children were released for break in December, have now more than doubled since school took them back.
But I don’t sing with the words. The sentences are not as beautiful. The melancholy lullaby is absent. This is a project that balances on a thread of tension, tightening as I pull it along over a span of weeks. It has very different tone; it speaks with a unique voice.
What an utter mess, I think. Maybe I’m too content to write.
You didn’t want to write This Day part II, I say.
You wanted a new challenge, I say.
You’ve written disasters that nobody wanted before, I say. And yet, you survived.
‘This one is probably going to be completely un-publishable,’ I told Husband.
‘You said that about the last one,’ he said.
The doubt still itches the back of my neck.
At the children’s party the acquaintance asked, ‘Are you working on something new?’
‘Ah, then you really are doing better, then.’
‘Yes,’ I’d said, standing there, left index and thumb throbbing, with two braces visible on my wrists, my back and left arm criss-crossed in blue tape while under my wide-legged trousers lurked a brace wrapped around a knee.
Yet in that moment, I’d answered honestly.
"I think women find it difficult to do their jobs, look after their children, cook dinner and write pieces. They just can't get it all done. And men can. Because they have fewer, quite different responsibilities. And they're not so newly arrived in the country. They're not so frightened of asserting themselves. And they're not so anxious to please. They're going to write their pieces and to hell with the rest. And I don't think women think that way."
I’m hoping that the long view will help us get beyond the simple diagnosis of ‘misogyny’ that we tend a bit lazily to fall back on. To be sure, ‘misogyny’ is one way of describing of what’s going on. . . But if we want to understand – and do something about – the fact that women, even when they are not silenced, still have to pay a very high price for being heard, we have to recognise that it is a bit more complicated and that there’s a long back-story.
- Mary Beard, The Public Voice of Women
- We just eat a lot of guavas because it's the only way to kill our hunger, and when it comes to defecating, we get in so much pain it becomes an almost impossible task, like you are trying to give birth to a country. -
- Jesus Christ died on this day, which is why I have to be out here washing with cold water like this. - - We continue putting up the posters; the thing is, we don't even care about any change, we're doing this only because Bornfree says he has some Chinese yams. -
- It's not the lying itself that makes me feel bad but the fact that I'm here lying to my friends. I don't like not playing with them and I don't like lying to them because they are the most important thing to me and when I'm not with them I feel like I'm not even me. -
- I've thought about it properly, this whole praying thing, I mean really thought about it, and what I think is that maybe people are doing it wrong; that instead of asking God nicely, people should be demanding and questioning and threatening to stop worshipping him. -
- And the adults just returned quietly to the shacks to see if they could still bend low. They found they could bend; bend better than a branch burdened with rotting guavas. -
The writer must be four people:
- Dogs are hardly an article of faith. -
- Ursula craved solitude but she hated loneliness, a conundrum that she couldn't even begin to solve. -
- He wanted the experience. He wanted to be a writer, he said, and what better than a war to reveal to him the heights an depths of the human condition? -
- The sour aura of dissatisfaction that seeped through the walls, along with the even less appetizing smell of boiled cabbage, was really quite depressing. -
- And the English soul, if it resided anywhere, was surely in some unheroic back garden - a patch of lawn, a bed of roses, a row of runner beans. -
On the 14th of February twitter inspired me to explain why I keep writing.
I write fiction, shaping an alternative reality, because I could not be content living an exclusively practical existence. Now it is a habit. A habit that occasionally produces a win, giving the addict enough encouragement to sin all over again.
- Read the full piece on my blog at Books Live