Journey of a Thousand Steps has moved…

Just a quick note to let you know that I’ve created a separate blog to publish Journey of a Thousand Steps (1000 words at a time).  Please visit http://journeyof1000steps.wordpress.com/ to follow our story…

xx Erica

Journey: 7

The days rush past us. Or drag past – depending on where you look. Every hour feels like eternity. Every week feels like a day. This is my interpretation of Einstein’s relativity theory. How time can pass both fast and slowly.

Aniek goes to theatre every second day. Today she was in there for two hours. Prof says he had to cut deeper in order to reach living tissue (no, no, no!). She received donor skin[1] from a woman who died yesterday.

Aniek wakes up for the first time. How terrible it must be to wake up from a deep sleep and to think that you are not only burnt, but also virtually deaf, blind and unable to speak! She can hardly hear; she can’t see, she can’t speak… but Aniek smiles at me! it is the most wonderful thing. I have to go and cry outside, it’s all just too much for me. By making slight movements, Aniek can let the nurses know when she has pain, and also that she does not want to hear a particular story. The nurses say she is “very good.”

My child always had the most beautiful smile. I always told her that no one on earth has a smile as lovely as hers. When she was two days old, she gave her first real smile. Today’s smile is more beautiful than any other. Even though her face is sore, she is smiling. She knows I am here; she is glad that I am here.

Dr. Jenny says: “I’d like you to put lip balm on her lips and eyelids every hour so they don’t dry out. And so that you get some touch.”

 **

Paul’s condition has deteriorated. The intravenous cocktail of morphine and adrenaline makes him crazy. He is desperate to talk, but can’t, because of the ventilator. He is like a prisoner. He opens his eyes and looks at me with a panicked expression, gesticulates wildly with his arms, shoves at me, pushes me away, calls me back, pulls me down, hits me, hits himself. Other times he is calmer, and can nod ‘yes’ or ‘no’ when I ask him questions. He remembers the fire, but doesn’t want me to talk about it. It is so difficult to understand what he means. He points his foot at one of the nurses, and when she comes close, he pulls her with his one hand and grabs her pen with the other hand. It is as tragic as it is comical. He tries to write, but then looks miserably at his bandaged hands. I feel so sorry for him. He is so frustrated. As with Aniek, I have to go outside the ward and cry a few times. To see how desperately he wants to say and ask things, is devastating. I assure him that Aniek is alive. I wonder if he believes me. I also reassure him that his face will heal, that he is not disfigured, but he just shakes his head and shrugs.

I feel deeply self-conscious and tense when talking to Paul. It seems as if everyone in the ward is eavesdropping, while pretending not to hear me and going about their business. I have to speak so loudly because his ears are covered in bandages, and in the silence my voice seems to be shouting.

I am worn out. Shredded, over and over. Please press the “STOP” button. Or at least the “PAUSE” button, so that I can grow some skin. I want to curl up and hide under the ground. So many ghosts chase me when I switch off the light. So many fears, so much terror.

At home, I hunt for photographs to put up next to Aniek’s and Paul’s beds. They are both faceless, unrecognisable now, wrapped in bandages like mummies. I want the doctors and nurses to know who is inside, what they look like. Whenever someone new comes to Aniek’s bed and starts asking questions,  I show them the pictures first. People become tearful when they see her lovely face.

***

Erica Neser (c) 2011

Extract from the English translation of “Een Voet Voor Die Ander” by Erica Neser (Protea Books, 2008)

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[1] Donor skin (allograft): Skin from deceased person.

Journey: 6

It’s been six days since the accident. It feels like six years, and when I look in the mirror, I don’t recognise myself anymore, even though I wasn’t burnt.

An article about the accident appears in a newspaper (no, three articles in three newspapers). I know, when people read it, they are thinking, somewhere deep inside, “Thank God this didn’t happen to my child.”

Maryke, Moll and I take a long walk on Strand beach – the family thinks I should get away for a while. I agree reluctantly. Absurdly, we start laughing about silly things. The marijuana tree my dad discovered this morning in the furthest corner of my garden – my garden, of all people – is so crazy that we just can’t stop. I cry with laughter. Laugh till my body aches. Laughing and crying are two sides of one coin, and we know it. This is hysteria. Pockets of madness trying to escape somehow. We probably need it.

Aniek is in the operating theatre. Dead skin is surgically removed – a process known as debridement. While we wait, one of the doctors comes out and tells us that she is still in grave danger. We don’t have the strength to laugh or cry now. We are stunned. Another word I’ve hardly ever used. And now I am stunned every day.

Another doctor suddenly comes through the doors and hastens towards us.

“Mrs. Nieuwenhuis, we need your permission to do a colostomy on your daughter.”

I stare at him uncomprehendingly. “What is a colostomy?”

“It’s when you make an artificial opening for the colon. In Aniek’s case it would be on her tummy – fortunately there is a patch of undamaged skin that we can use. It will prevent faecal matter from coming into contact with the burnt skin and it will lower the risk of infection. It is only temporary. Can we go ahead?”

He talks too fast for my slow mind. I nod.

An angel of a doctor, Jenny Thomas,[1] sits down next to us on the little wooden bench outside the theatre. She has come to give us courage. How dependent we are on the words of doctors: overheard, whispered words among themselves, the looks, the dots on graphs… how our vocabulary has changed! So many new things. Suddenly we talk about debridement,[2] Integra,[3] Acticote, ventilators. Morphine and adrenaline. Thorny strangers that have nestled in among comfortable words such as garden, school, car, kitchen, bread, sleep. We learn to interpret blood pressure readings and heart rate, and we know whether it is good or bad.

Aniek emerges from theatre after four hours. We find a little bit of healthy skin at the side of her neck that is not covered with bandages. It gives me hope. I hold my fingertip against it for comfort. Mine and maybe hers too. I ask the doctor to make a note on her chart that they keep this bit of skin uncovered in future, because it’s the only skin we are able to touch. The doctor painstakingly writes down my request. It makes me feel important to be taken so seriously.

To see my child like this, wrapped in bandages from head to toe, tubes everywhere, connected to monitors on all sides, is beyond frightening. My heart races, pulses in my throat, incessantly – there can be no relief from it. An icy cold hand grips my heart tightly. I have to concentrate to breathe normally, to prevent me from gasping with suppressed panic.  At times I want to give in to it, to let the panic explode in me like a dam that breaks through its walls, but I fear that it would rip my whole being to pieces if I let go; that I would fall on the ground and kick my legs like a madwoman, or run screaming through the corridors, unable to stop. This is what I want to do. I cling to deep breathing, to control. The constant suppression of this immense panic causes me to become light-headed, and often I have to sit down with my head between my knees. Each time a doctor discusses the seriousness of Aniek’s condition with me, I have to sit, or else fall to the ground.

I can’t face going to see Paul. It’s just too hard to see him, hear him, touch him. His swollen face, his familiar and yet unfamiliar skin with freckles. The smell of the hospital, the bandages, his discomfort last night, how he tried to get out of bed, tried to grab things, tried to talk. I send him three pillows and his soft toy from when he was a boy. I hope that he knows my thoughts are with him all the time.

Intensive Care is like another planet. Everything is strange. There are machines that we have to learn to understand. There are people around us speaking a strange language. I want to know everything. I want to understand every number on every monitor; and to know the implications of every number. I take Aniek’s file out of the trolley next to her bed, and read the notes of doctors and nurses. Normally I would not dream of doing such a thing, scared to be caught out reading confidential information, but now I don’t care. She’s my child; I have the right to know what is being said about her. If I see something I don’t understand, I ask, and I keep asking until I understand. It helps to combat powerlessness.

Aniek is kept sedated with medication. There is no indication that she knows we are there. Where is she, I wonder. What is she thinking about, what is she dreaming? Is she scared? We sit and talk, non-stop, even if we talk about trivial matters: we describe the curtains, what the nurses look like, their names. We reassure her, over and over, that we are here, all of us, and that she is never alone; that she is in good hands, she is safe, she is getting the best care. We keep vigil day and night. She must never be alone. And if she should die, she must not die alone. I rest my forehead on her bed and repeat to myself, “Aniek, you’re alive. You’re alive. Live!” I’m not asking. I’m insisting. You live.

The doctors and nurses behave around Aniek as if she is completely awake. Such respect, such tenderness, such care I have never experienced. If they need to turn her, they tell her what they’re going to do and why. No-one talks about the seriousness of her condition near her bed, and if one of us starts crying, one of the nurses gently leads us outside, holds us, reassuring us that she is in the best place.

Acquaintances pop in to say hello and to hear how Aniek is doing. I get tired from all the talking, of people asking questions, needing information. The process of searching for words, of moving my tongue exhausts me, moving air over my voice box exhausts me.

The days are long, the grief is long. Curled up like a snake inside me, ready to strike. At home I walk down the corridor and see the light in the main bedroom is on. “Hey,” I think spontaneously, “Paul must still be awake.” And then, the fist into my stomach, punching out my breath.

We sit, like birds getting wet in the rain and simply unable to avoid getting soaked, between hope and despair. We cannot let go of hope, because the alternative is too awful to even contemplate. Each day that she lives, is one more day. I repeat to myself, “She is still here. That is all. She is still here.”

And all around us, other people’s children are dying.

***

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[1] Co-author of A Practical Guide to Paediatric Burns. See references for details.

[2] Debridement: surgical procedure of removing dead, burnt tissue to prepare for skin transplants.

[3] Integra: artificial skin replacement with collagen fibres which stimulate skin regeneration.

Erica Neser (c) 2011

“Houston, we have a problem”

The Day Moonman Went Flying

“Who are you?” the Moonman asks, looking at me with one eye wide open, his pupil the size of a pinhead. “Are you my friend?”

“Yes, I am your friend. I’m Erica.”

“I have a girlfriend called Erica. She’s a very sweet woman…”

Holy Mackerel, the man is as high as a kite. I seem to have gone from waiting for him to come home from the Barents Sea, straight to waiting for him to come down from a bad trip. How on earth did we get here?

Motorbike accident. That’s how. Even the safest driver on the road, even the Moonman in his brightest reflecting jacket, can be riding along happily one moment and the next moment go flying over the handlebars to land face down on the tar. (The Moonman has a pretty good track record on the road, even though he drove his very first vehicle right into the Bille River in Hamburg. He was 18 months old at the time, only just got his licence. He had parked on a slope and started bouncing up and down in his pram while his big sister was chatting to a friend. No doubt learning from this almost-fatal error in judgement, he went on to become the safest driver I have ever come across.)

He had phoned to say he’s coming over for tea. I put the kettle on – it only takes him a few minutes to get here. He’s so happy to be home after six weeks at sea, and especially happy to be riding his bike again. But instead of hearing the familiar purr of his big bike, a stranger arrives at my gate and shouts, “Sven’s been in an accident! Just around the corner!”

I drop everything, grab a sweater and shoes and run. I find him lying in the road, surrounded by people and cars. We spend next hour trying to keep him still (impossible), telling him that he ambulance is on its way (where the hell are they??), and reassuring him that his bike can be fixed. And in between, I’m fishing his driver’s licence from his wallet, calling people, talking to police and worrying. Lots of worrying and a fair amount of praying. This all happens right in front of another friend’s home, so there is plenty of support. Her children are standing anxiously at the window. They are desperate to come out, but she tells them to stay inside and pray.

“But Mum, will it still work if we pray from behind the window?” one of them asks.

I can’t help but smile. Kids think of everything.

Finally the ambulance arrives. It’s not just a matter of “one-two-three-hup! and in you go.” If only. First, they want to take off his bulky jacket, which is in the way. Then the fleecy top. Next he needs to be moved onto a stretcher and strapped in, except he won’t lie on his back, it hurts too much. He ends up on his side, but now the straps are too short to go over him. Moving an injured Moonman is a bit like wrangling a horse to the ground, but lying on his back is the only way they can strap him in safely, and heaven knows, we can’t have the man falling off his stretcher while being loaded into the ambulance. So they log roll him over again. He pulls his knees up, the only bearable position.

Moonman grips my hand in pain. Some years ago, his physiotherapist said something about his muscles being very strong, so I often tease him by saying, “You’re so strong!” in an American  blonde bimbo voice. But boy, she was right, the man is strong. He crushes my fingers and the chunky titanium ring (with diamond) he gave me bites into skin and bone. I give a loud yelp, causing the paramedics to all look up at me.

“It’s nothing, don’t worry, he’s just breaking my fingers. Nothing wrong with his arms and hands!”

“I think the baby is coming!” the Moonman groans.

“I can see the head – just one more big push!” I say, unable to resist.

“I’m going to be a father!”

By now, the paramedics and stunned bystanders are all in stitches.

“Nothing wrong with his sense of humour, either,” I tell them.

After some more tugging and yanking, the Moonman is safely tied down, and gets lifted into the ambulance. I run home to get my car and, liewe genade, to change into something decent – I’m wearing a particularly unattractive ensemble of tracksuit pants, crocs & socks and my oldest sweater. And I know from experience: what you wear when you walk into ER, you wear until tomorrow. Vanity prevails. It only takes a minute or two.

I try to not drive like a maniac to the hospital, thankfully just five minutes away from my house. The Moonman and I have been here before, when my dogs got into a fight and I got bitten, but that’s a story for another day. I had hoped not to come back here again in this decade.

Moonman is wheeled away and I am told to wait and be patient. (Funny how patient and patient are spelled the same way). So I wait patiently for the patient. Finally I am called in, I am allowed to see him. A rather handsome man who looks like he’s from DRC is the doctor on call.

“Madame,” he says in a lilting French accent. “This news is not good. See on the x-ray here? This vertebra is fractured.”

Having your spine snapped is probably one of our biggest fears, and here it is now. Surely not! Not that! But it is true. The diagnosis is confirmed by a neurosurgeon and an MRI scan.

“So what happens next?” is what we all want to know.

The doctor explains the options:

Option 1: Moonman goes home and stays in bed for four to eight weeks, OR

Option 2: Moonman gets an operation and goes home and stays in bed for one to two weeks.

It’s a no-brainer. Moonman, as you may have gathered, does not sit (or lie) still for very long. He likes to keep moving, he needs to DO THINGS. He is never, ever bored and always finds something constructive to do. So Option 2 it is.

The medical aid sends a quote for the procedure, and I read it out to him:

–        Cement + mixer

–        Hexagonal internal set screw

–        Rod (straight) 5.5mm x 160mm

“No problem, I can get all those at Builders Warehouse,” I quip.

Sadly not. Moonman, always one to over-engineer whatever he builds, now needs Teutonic precision himself. It takes three hours to put Humpty Dumpty together again, in a procedure known as kyphoplasty (google it). A balloon is inserted into the fracture, gets expanded and a special cement is injected into the space. Next, a guiding wire, a couple of screws, nuts, bolts and rods are put in, sew him up and Moonman is ready to roll.

When he comes out of theatre, he is in Great Pain. The Greatest Pain He Has Ever Experienced. He begs for more drugs. And more. The nurses shake their heads and say he’s already had everything they can give him. He is clinging to the rail of the bed and crushing my fingers again. The anaesthetist is called in. This nice man takes time to explain the different types of drugs to me, their history, their pro’s and cons, and gives the go-ahead for a cocktail that brings to mind Heath Ledger, Michael Jackson and others… I am scared shitless and not ashamed to admit it.

And so my poor Moonman goes flying.

“My girlfriend is called Erica,” he informs me again. “I just call her my wife, it’s easier. I don’t know where she is, she’s usually here, making sure my stuff is all sorted and in the right places. I don’t know if she knows what happened to me. If you see her will you tell her? She’s medium height, pixie ears. She drives a white car…”

“Mm-hmmm…”

“Is there a puffadder under the blankets? Something’s huffing and puffing around my legs…. I have three dogs: Lucky, Sheeba and Toyboy,” he announces (close but no cigar: it’s Shia and Toby. I suppress a nervous giggle.)

“Are you my friend? Where am I? I can’t hear myself think. I don’t know where my mind is. It’s hiding. What’s happening? Who am I?”

What do you say to someone who’s tripping? I have no idea at all. I’ve been through some strange things in my life, but I’ve never done drugs, never even smoked a cigarette, for crying in a bucket, and I have no clue what kind of reassurances are appropriate in such a situation. Do you just play along? (“Of course I’ll give Erica the message, she’s just gone outside for a moment.”) Or do you try to get through with the facts? (“Listen to me: I. Am. Erica. It’s ME! Skootle. Look at me!”) The factual approach fails, so I promise to find his pixie-eared wife and deliver the message. At around eleven o’clock, the nurses gently chuck me out – they think I’m keeping the patient awake. Yeah right. I go and sit in my car and blubber a little to myself.

Thankfully, the next day, the Moonman recognises me again, but our conversations are still… uhmm… interesting and rather one-sided.

He sings, quite loudly, “Happy birthday Lasagne!”

“Ohhh kaayyy…,” is the most suitable reply I can think of.

“I think they’re still the best all round,” he advises me sagely.

“I agree.”

“Jy moet versigtig wees, anders byt hy jou vingers af,”* he goes on.

“Mm-hmm,” I reply.

“Skootle, this debate is getting too difficult for me.”

“Ja nee, me too,” I say.

The nurse comes in to check on him, providing a bit of distraction. He even seems coherent for a few minutes.

“This mattress is very soft, I just can’t get comfortable. Why do they have such pap mattresses?” he asks her.

“Meneer, these mattresses are made for fyne mense… Fyne, kleine mense,” comes the gentle reply.

You can say a lot of things about the Moonman, but fyn and klein just do not apply to him.

“There’s an octopus with its tentacles broken off,” he tells me.

“Where?”

“What?”

“The octopus…?”

“What octopus?”

“Never mind.”

“They’re using chickens nowadays. Little chickens. They peck at the wound to help it heal. Hier bring hulle nou die hoenders.”**

“Really?”

“You’re so pretty – I guess that’s the drugs talking…”

“Thanks, love. You’re pretty too.”

“There was a shipwreck this morning. Many people drowned…”

“That’s sad…”

“And earlier there was a lion in the ward. And a snake. But I was too tired to deal with it,” he mumbles.

“Understandably. But don’t worry, it’s all sorted out now,” I reassure him, stroking his hair. What else can one say? It is all sorted out, but it also isn’t all sorted out. This is just the beginning. Even while he sleeps, he is worrying about everything.

He stirs again and looks at me with those green eyes.

“Skootle, can you get me out of here for ten minutes? I just want to go check out my bike.”

“Uhhmm, I don’t think that’s a good idea, precious.”

“Why not? It’s not far, it’ll only take a few minutes!”

“We’ll ask the doctor when he does his rounds later.” (Yeah right) “Do you want some tea now?”

“Oh. Yes, please… You’ll make someone a good wife someday, Skoodley.”

***

 The patient has just pulled the door right off the cupboard next to his bed, trying to pull his weight over. A few minutes later, he says, “I think someone has broken into my room. Look, the window is open and the cupboard door is broken off!”

We need to talk to the doctor about the meds, that much is clear.

Moonman begs to be discharged. The surgeon gives the green light and I start loading up the car and preparing mentally for my role as home nurse and chauffeur. Drive extra slowly, no sudden movements, creep over speed bumps – I think I can do that…

Moonman walks to the hospital front door leaning on me on the one side and a tiny little nurse on the other. It’s slow going, it’s sore, but we get there eventually. Getting into my modest mum’s taxi is not easy for my Moonman even under normal circumstances – he’s a tall guy. Now he seems even taller because his spinal scaffolding can’t bend. But Moonman has smelled freedom and he’s not going to be deterred.

“To BMW, please,” he says, pointing, as we pull out of the hospital parking.

“What?! You mean right now?”

“Yes, I want to check out my bike.”

“You’ve just been discharged after a back op!”

“Just quickly, Skootle. It won’t take long.”

“But you’re in your underpants!”

“I don’t mind.”

“You’re sure about this?”

“Yes.”

So off we go.  Moonman checks out his bike where it is standing in the workshop. He’s amazed, as everyone else, that it didn’t suffer that much damage. Broken radiator, gear lever, a few scratches… Then he needs the toilet. There’s only one, and only one way to reach it: right through the coffee shop, which is teeming with bikers. Before I have a chance to object, Moonman has hobbled halfway there. I run to the car – his jeans are in there somewhere. I chase him to the bathroom and help him put his pants on. He’s still barefoot, his t-shirt is porridge smeared, his hair is wild, he needs a shave and he’s still wearing his hospital tag around his wrist, but at least he’s basically decent for the trip back out.

“We may as well have some coffee,” he tells me now.

“OK, if you feel up to it…”

“And while we’re at it, we may as well have some toasted cheese…”

“Up to you…”

“I might not be the best person to visit the showroom at such a busy time, having just had my back broken in a motorbike accident… I hope their sales don’t take a knock because of me!”

The visit provides the Moonman with a welcome morale boost and he leaves feeling happier than he has been in a week. We head to my house, his temporary step-down unit until he is strong enough to manage by himself.

After a few days of intensive home nursing, Moonman finally goes home. It’s 13 days since the accident. Pretty remarkable to be walking and driving ten days after receiving his bionic back.

Moonman settles down on his sofa, surrounded by his dogs.

“Two Stillpanes and a double rum and coke seems to work well. I’m feeling quite jovial,” he sighs, smiling contentedly.

(to be continued, no doubt…)

™

* “You must be careful or it’ll bite your fingers off.”

** “They’re bringing the chickens now.”

Erica Neser © 2011