Could this happen to you? Answer: yes, it could. Stroke can happen to anyone. See my perspective and thoughts through a catastrophic stroke and beyond.
Spades of Determination:
A Locked-in Journey
© Rachel Capps 2017
For my husband and our kids.
Snug and warm in my bed, deep asleep. It’s May—late autumn in the southern hemisphere.
My world is jolted. I wake. The clock says its 6:00am but no light floods through our venetians (as usual) to indicate it’s morning. My ears strain to distinguish the Monday morning garbage truck clunks and revs in the silence.
Why am I awake?
My world starts to spin faster. A kid on a carousel that’s not slowing down would challenge this sensation. This isn’t normal. I try to bottle my rising panic as I lie there. My heart pounds. I’m terrified.
I call to my husband, Shane. He immediately wakes.
“You need to call an ambulance,” I tell him. I’m in control of my voice, but I fear these may be the last words I speak to him. I know something is wrong, I just don’t know what. My eyes are squeezed shut.
My head spins even faster and I don’t dare move in case I spin more. My body is a wilful prone stone statue. I hate the spinning, but it won’t stop. I sense this is not normal and my life is in danger. I try breathing deep to calm my nerves. It doesn’t work. Like a bolting, petrified horse, the panic escapes.
“I love you,” I blurt.
“I love you, too,” Shane says and leaps from our bed and, desperate, phones the paramedics. He stumbles over words in a hurry to convey our urgent need.
Within minutes, the paramedics arrive.
Yay, they’ll make me better.
With one eye open, I see a male paramedic in a blue uniform kneel by my bedside. He takes my limp hand and squeezes a small clamp on the end of my finger to measure my pulse. I’m still in control of my sight even if it’s moving. They ask general questions which I vaguely hear and Shane answers for me. I feel too sick to concentrate on forming words unless I have to. My hopes plummet. My symptoms baffle them and suggest I present vertigo, but recommend I go to hospital. They ask if I can walk.
My ability to speak is on and off. I shake my head.
They strap me to a thin stretcher and carry me with slow, gentle steps down the U-turn in our polished wood staircase, toward the ambulance. With every step they take, I vomit into a bag. My jaw snaps open and closed – like a Hungry Hippo game. Teeth sink into my tongue, hard, over and over. I can’t stop the biting, even if I try. Please be over. My children, Isabella, Joshua and Harrison stare at me in their caricature pyjamas, wide-eyed and uncomprehending, pale white faces with big confused eyes, riveted to the landing and eyes fastened to me.
I want to yell: “It’ll be okay!”
Only, I can’t. My mouth is full of tongue—shredded to pieces.
Auntie Barb is at the front door, dragged from her bed in the dark before dawn, ready to watch the kids.
In the ambulance I’m asked, “Norwest or Blacktown?”
Norwest is closer.
I somehow manage to mumble, “Norwest”. I must try communicate because Shane stays in the house, sorting kids.
We gently turn corners in the ambulance because the paramedics think I have vertigo. Most of my ride is a blur, but as we near the hospital (I know the streets well), I recognise bright orange street lights flashing overhead, one-by-one, as I lie on my back on the gurney. Fog lights. I know we’re close to the hospital. Then my world fades to black.
I don’t remember the ambulance stopping, doors opening, being pulled out and lowered to the ground or pushed through the hospital doors on my way to Emergency.
It must be six or seven in the morning by now.
The gaps in my memory are scary, but now we’re at the hospital, I’m no longer afraid. The hospital will sort out whatever is happening to me. I vaguely recall a television ad saying to act FAST. Face Arms Speech Time. We acted fast.
The gaps span hours. I lose track of time. All seems surreal.
Only, this is real.
I wake again. Thank God, my good friend and personal assistant Jo—a two-in-one person—is here. I don’t remember her arriving. A special client buys her first house today and she must settle. My client has booked her removalist, organised her electricity connection and her money has been gradually moved into my trust account (the banks only permit a certain amount be transferred by electronic transfer into my trust account and her purchase price is greater than the maximum, which isn’t much). We’d been moving funds for a week or more in readiness for settlement. My being sick will decimate all our careful plans. I desperately need to sign cheques before I lose the ability to write. Instinctively, I sense that’s next. The long and sloppy chequebook is in front of me. My fingers wrap around a pen. I put pen to paper.
I black out again.
I wake surrounded by strangers. Where am I now? I’m beyond being baffled. Beside me is a grey machine and nurses bustle around the corridor. I sense the machine is in a corridor and not a room. My throat is dry. I ask a nurse walking by me if I can grab a drink. She tells me no. I’m astounded. Flabbergasted. Why not?
My pyjamas have disappeared and I’m in a white hospital gown.
When did that happen? I can’t recall a thing.
I can’t even remember what I wore. Who cares? Normally, I am a lioness protecting my possessions and clothes, but my pyjamas are not important now.
Somehow, I’m on a stainless-steel bed at the centre of the grey machine. Perhaps someone helped me onto it? My head enters a dome-shape machine which bangs at me—a machine gun beside my ear. The tiny space seems to get smaller.
I don’t recall returning to emergency.
My vision returns through a tunnel of inky blackness toward a pinpoint of light, growing bigger. I’m on a firm bed. Stainless steel too? I’m the only patient inside a small room and a doctor snatches a needle of something from the counter and rushes to my side. I want my kids. I begin to sink into black, but I’m not there yet, I see and hear a doctor say in a rush, “perhaps an allergic reaction?” This is it. I fall into the darkness. Warm. Unaware. Bliss. Like sleep, but without dreams.
What transpires next is so disjointed the moments can’t be real. I learn weeks later, hallucinations descend, but to me they’re as real as daytime.
I’m in another small room, half the size of the last room. This room looks so real. I am in a hospital room. My oldest cousin and his wife stand by me while I’m upright in a grey machine that covers my limbs. I could be a scarecrow. Without the machine, I’d collapse. I know it. I resemble a person with broken arms and legs. My cousin and his wife hold buckets full of concrete. They pour the concrete over my limbs and don’t speak, not even to say “hello”. That’s out of character for them. They leave.
I am suspended alone in time.
The scene shifts. A thin, hard silver bed is cold against my back and I’m in a room full of hard beds, like morgue tables, row-by-row, all curtained off. A watery-yellow sheet drapes over me untucked and hanging loose. I remember the curtains and sheets being a pale autumn yellow. One whiff and the room smells sterile. The moment is vividly real to me. Ghosts float in my room, like Casper. Dozens of ghosts float above me—they lift my sheets, with a pinch, little tepees, around my limbs. They’re sticky-beaks.
Wait till I tell Shane.
One of them says to me “If you don’t lift a limb, they’ll remain dead forever.”
The hallucination shifts and I find myself on a stretcher in a loading dock. The walls are concrete and painted a pale yellow. A person pushes me toward a long black hearse. My instincts scream the hearse is meant for me. We stop and wait whilst I hang on. I ache to see my family again. My dad approaches with a brown jumper thrown over his shoulder.
“Thanks for doing this. Lee appreciates your help,” he says to a couple who I assume are my sister’s friends. “Her husband won’t want to be saddled with a cripple for life.” Are they waiting for me to die?
They acknowledge his thanks and he strolls away leaving me alone with strangers. Why is he leaving? I somehow know I must live through the night. Just don’t die. Don’t give up.
As the night wears on the girl comments.
“This isn’t a quick gig.”
“Yeah, she’s hanging in there,” the guy responds.
They tap away on their phones again. Time passes. The minutes tick by. Soon the sun streams through windows and I’ve managed to hang on. The hearse drives away.
What a relief.
Ever since the age of ten, I dreamed of growing up to be a writer. I burst with excitement when my mum bought me an old black typewriter, which I perched on my blue and yellow Australia-map desk. I banged away at each key with such enthusiasm. There is something about the English language I never tire of. Practicality and romanticism, all in one. I was forever discovering new words, and with each new word, new horizons.
At around thirteen, Nancy Drew entered my life. Her books were my first hair-crush. For years afterwards, I tried to mimic her curls—soft and perfect around her face. Her dad worked from home as a lawyer. Oh, what an admirable way to work. I wanted to emulate him, channel his essence. Throughout my teenage years I planned stories, but writing seemed a pipe dream I couldn’t earn a penny from (I couldn’t show anyone, could I?) and in the fullness of time, I transformed into a sensible working adult.
I studied law—hard. The reading list boggled the mind. Text books averaged two inches thick and cost a bomb. I still enjoyed using language, and that was my compromise.
After nine years studying part-time, working full-time in a law firm and two years of practical experience at The College of Law, I became a lawyer, standing up amongst my peers in the Supreme Court in front of three wigged Supreme Court judges. I loved it, too. In my late thirties, I started a law practice from home.
By then, I’d met Shane, we were fortunate to have three kids and I managed to eventually work from home around them. Naturally, they hated my working despite my working from home.
The day after my first emergency visit to hospital, I’m told I was taken to hospital at six in the morning and suffered a stroke at three that afternoon. In a coma, I was flown by helicopter to Nepean Hospital, where there was a spare ICU bed. Jo had my phone and a few friends texted her, expecting to be texting me.
“Are you all right?”
My friends receive a blunt text back: “Rachel in coma. In ICU”.
News to rock their world.
I slip between semi-consciousness and waking.
A three month say in ICU begins. Seamlessly, I slip into unconscious and a scene in a capsule. I am one amongst many in a ride, in a circle with pods going around and up, only aware of myself. I’m reminded of being a teenager lifted up in a ride. The Zipper rolling over and over. Back then, I laughed. Trouble is this is reality turned upside down. Reality is no fun. My child’s view of the world vanishes.
I need to lift my limbs. Just lift them already. I try. But as much as I try, I can’t. Why won’t they work? My limbs are as heavy as an anchor and I can’t budge an inch.
I’m foggy, but conscious again and in a circle of patients. I hear the tearing of a bed-sheet, like someone pulls a tablecloth and leaves the dishes on top. A neat magic trick. One of the doctors screams at the nurses, annoyed. I recognise the voice of the doctor I like—she cares. Two patients die. I am unable to comprehend or make out what happens and too sick to care. Too disoriented.
I slide into my unconscious state again. I lie in a bed and bright shafts of golden sunlight stream in. I must be in Brisbane. Beside me, just out of reach—if I could have moved—lies a dog, perhaps a golden retriever. Am I awake?
The dog reminds me of the golden retrievers we grew up with. My brother Mark liked golden retrievers, so mum bred and showed them. So happy. So loving. So loyal. I miss them, especially Beau, our Goodo’s ad dog. All dead now.
Life goes on.
The dog stays by my side a while, its presence a soothing comfort.
I overhear a nurse speak to another patient who suspends a leg in the air, “What’s the first thing you found useful in hospital?”
She answers after a moment’s pause. “A shower.”
A preview for Magic Mike plays over and over, and after what seems an eternity the movie plays.
Haven’t I seen this?
I wake gradually, and snippets of reality stand out. Vivid. Clear and true moments. A female voice says, “You’ve had a stroke. Sometimes life throws these little curve balls.”
Little curve balls?
This is a monster curve ball.
A doctor tells me I need an operation. Only a small cut in the throat to insert a long, floppy tube—a tracheostomy. We’re in a small cubicle which is private. The doctor wears a blue surgical cap. Blue scrubs. Is that an English accent, I detect? I can’t ask. This bothers me, for I’d like to ask. After all I’ve just experienced, I crave any semblance of normalcy. I withdraw inside myself further. I can’t even voice my need. I can’t talk. Why bother? My mum says “Don’t worry about the scar.”
That’s the last thing I’m concerned about.
Eyes up to the doctor. I agree but I have no memory of the operation. I have a trachie though.
Dad is beside me. Does he hold my dead hand? “We will walk out of here,” he says in a harsh whisper. I don’t believe him for a second but I’m prepared to try. I’ll give getting better my best shot. I’m confused by my hallucination as I believe it real and I need to tell Shane.
Shane strides into my room carrying flowers and says, “It’s only for a season.” I cry for all I’ve lost and at the work ahead of me—the enormity of the task ahead crushes me. “The doctors say you’re only young,” says Shane. No, I’m not, I’m forty-one. That’s no spring chicken.
A doctor says, “You’ll never turn a light switch on again.”
There is the repeated slap against skin, a snap, snap, snap—someone puts on rubber gloves. I’m lying on my side and a nurse has an intrusive gloved finger up my anus.
“It’s just there.” she says.
Months later, I find out from Shane, he’s been told ninety percent of people who suffer a brainstem stroke die, and even if I survive, I could die within the next four months, so not to get his hopes up. The chances are I will die. My family decides not to tell me directly of the diagnosis. A wise decision, indeed. My mind is so fragile, I’d talk myself into dying. I believe in the power of the mind, thanks to my mum.
My eyes open and its night. The lights are off. There is a ‘beep-beep’ coming from behind my head, steadily in rhythm with my breathing. The muscles in my hand contract. Shrink. My body changes, forever deforming, and I watch helpless … a spectator. My hands become shrunken claws, with nails, before my eyes. Fear tightens across my chest. I start to panic. I struggle to breath. The beeping gets faster. Someone says, “You’re okay. Try to calm down. The beeping is your heart rate.”
Tubes sprout from me. A tube is stuck to my nose and, from there, I’m told the tube goes into my stomach to feed me. In my neck is the trachie to help manage the secretions in my lungs, explained to me earlier. A catheter clips to my bladder and the bag is nearby. There is oxygen but within weeks I’m weaned off it. In my mouth a firm and cigar-like foam object are wedged between my teeth to keep them from causing further damage to my already swollen tongue. I look stung by bees. My face is puffed up and everyone tells me, but I can’t see. I can’t see my reflection in a mirror, nor could I ask for a mirror in my present state, even if I wanted to. The thought never crosses my mind. I notice there are no mirrors in the ICU.
I don’t remember any of the tubes being attached to me. That’s lost time I’ll never get back. When I was a teenager, my late Nan (my mum’s mum) often repeated to me “Always wear clean underpants. In case you’re hit by a bus”. I haven’t been hit by a bus, but life itself—head-on. I don’t even know what happened to my underpants. Probably cut off and binned. Importantly, I know they were clean. Thanks, Nan.
Dad squeezes my right leg and toes and asks if I feel anything. How is my perception of touch? I wish I could frown. Do people lose sensation? I’m lucky. Not me, I dodged that bullet. My perception’s like normal. I can’t blink—that’s too hard. I look up for ‘yes’. I pretend nothing has happened although to me the hallucination of my dad has rocked me to the core.
“Can you hear okay? It seems so…” Can I hear? Yes! I look up for ‘yes’. People lose hearing too? I am virtually unscathed compared to some.
“Don’t worry, it’ll come back,” he says. He means my leg. How can my leg ‘come back’? My leg is dead—freezing to the touch, grey and heavier than my left leg. Gravity crushes it—the heaviness of gravity is like a huge and invisible concrete block. I understand some basics of my body. There is no connection between my leg and my brain. If there’s any circulation it’s minimal, yet somehow, I live with a barely functioning leg. I live with a dead limb. How? Truly, despite the trauma I’ve endured, I’m amazed by my body. How can my heart manage to pump blood through my heart? Never ceases to amaze me. My brain remembers the essentials. Walking isn’t essential but my heart is.
Incredible. My body knows.
All I think is, if something bad is destined to happen to me—which it did—I’m glad it happened to me and not our kids. Thank God, they are physically unscathed—even if this will give them mental scars. To see them hurt would cripple my mind.
I am encouraged by everyone around me to imagine the future.
“We’re going to France to watch the Tour de France one day,” Shane insists.
“We’re coming with you,” adds my best friend Iesha.
So, I start imagining watching my daughter walk down the aisle and me standing up in church to watch her wedding. I imagine walking, holding onto bars, around a house. I imagine leaning on a shopping trolley around my local supermarket as I grocery-shop. I imagine sitting in a wheelchair with a book shoved down the side between my leg and the wheelchair arm in a kitchen. I imagine picking my kids up from school. These are images I run through my mind over and over. That’s a tall order. My uppermost priority is to be there for my kids.
Surely any mum would think that?
A man hesitantly approaches my bed. He’s tall with dark hair. There aren’t many faces I recall. Who’s this? A doctor? Only he’s not dressed like a doctor. A specialist? All of a sudden, realisation dawns. I’m used to seeing him with Iesha. It’s her husband Yuggi. D’oh. Why aren’t they together?
Next is my half-sister Lee with her husband. She’s due to give birth to her first baby any day. I’ll miss the birth—my first nephew. This is so wrong. She’s perched on the end of my bed, rubbing her baby belly. Glowing. Content.
Another friend and her husband pray over me.
One evening, a nurse looks at my tongue and the cigar I bite on to keep my mouth open.
‘We need to do something about that,’ she says.
She bustles away and organises people and equipment. Within an hour, my bed is pushed from my room.
“We’re going to do something about your tongue,” she says.
The next thing I know I stare over at my room as I yet again sink into blackness, a few hours of reprieve from the nightmare to which my life is reduced. I begin to long for the black nothing. I know I no longer fear death. I welcome it, but the prospect of not being around to watch my kids growing up quickly negates that thought.
I wake and the cigar is gone.
In the following days when I’m aware of my surroundings, at different times Shane and Dad comment how much better my tongue looks. I don’t know what the nurse does but it’s a change for the good.
I’m simply grateful to say goodbye to the cigar.
Next morning the fluorescent lights are on and I become aware I occupy a room all to myself. Everything is stark white. Me too. I wear a crisp starched white nightgown with the NSW Health blue stamp. I don’t remember changing from the last gown. I surface through a dark tunnel towards the light. Before I’m out of the tunnel, an alphabet chart is thrown in front of my eyes, held about a foot from my face. I can’t move. I can’t talk. I can’t blink. I can only look up or down. This doesn’t make sense. I’m healthy. I don’t drink. I don’t smoke. I’m not allergic to anything. There is nothing in my family history of stroke. How can I suddenly go from able-bodied to a lump on the bed? A dead lump? Unable to get up? Like a quadriplegic? I don’t understand. I thought a stroke only happened to older people. My lack of education on life is glaringly poor.
A lady in green explains how the board works and asks me to spell. The left side of the board is blurry and my vision moves side to side, so there are effectively two boards. I try to focus on one image. I barely manage to spell a word through my moving tunnel vision. I’m caught in the end scene of Grease, so it seems. When in doubt, I lie.
I quickly get the hang of the board but I find holding on to my concentration is hard work. Thoughts escape mid-word as I’m losing my train-of-thought all too easily. A nurse or family member calls out a letter of the alphabet and I look up once at the letter until they form a word. I instantly drop common manners. I can’t waste anyone’s time in the rat-race to spell out, ‘please’. I watch the nurses, family and friends come and go as they please. I can’t help envy them, going home to their life, laughing, holidays, social life and working but I stop myself. I can’t make life harder for the nurses, despite everything.
I go through a dozen different boards over the space of a year before we finally settle on one that works for me.
One of the first words I spell is: ‘t-o-u-r d-e f-r-a-n-c-e’. My family think I spell French. I don’t know French. I probably spell gibberish but I think I spell correctly. I find their silence on my potentially (is there any doubt?) poor spelling is a kindness. They don’t point out my mistakes. Too kind. I strive to be normal and they don’t shatter my feeble attempts. Ideally, I envisage being home, in bed, watching the Tour. I want to sit up late with Shane and have him try teach me cycling tactics. I yearn to do that, as normal.
I’m transported back to the day we stood in Paris behind silver barriers lining the Avenue des Champs-Élysées with one of Shane’s workmates—also Australian. For hours we waited in bright sunlight, dappled by shade, in a prime position as a parade of cleverly designed advertisements (people dressed up or balloon-cars) and sponsors paraded before us. Finally, the riders rode leisurely passed us before they got down to business and sped by a few more times. The blue of the US Postal team was there but the race was already won.
Lance Armstrong wore the yellow jersey. This was a day for the sprinters. Years later, Lance Armstrong was stripped of his win for doping. Personally, I think a rider who fought cancer can be forgiven. He still accomplished the unthinkable. Drugs can’t enhance performance that much—can they? I don’t know the facts though, so I just speak from my own ignorance.
Boy. That day the trio of us got sunburned … bad.
One morning, a nurse in a navy uniform strides in and tweaks my toe. “She’s the kind who walks back in here,” she says confidently. I so want to walk back in here. I’m despondent. How can I walk in anywhere? She’s so certain, the polar opposite of me. She is the yin to my yang.
As the swelling in my brain subsides I start a daily routine with the doctors and nurses. We harmonise. A life of hospital monotony begins.
My hair drives me crazy the moment I become fully aware of my surroundings. Everyone brushes my hair from my face but it’s not enough. They have read all they can lay their hands on about brainstem stroke. They know hair is annoying but they don’t appreciate how really annoying my hair is. I flat out hate how much it still annoys me. My hair is in my eyes or tickling my face ALL THE TIME. I can’t see through it.
I spell ‘i w-a-n-t m-y h-a-i-r c-u-t’.
Somehow Shane tracks down my hairdresser Tracey. She has cut my hair for nearly twenty years and her mum waxed my legs regularly. Over the years we have morphed into friends. We watched our kids grow. She was even the hairdresser to cut a lock of hair from their first haircut for me to keep. Tracey has three beautiful blonde girls a few years older than mine. I always watched Tracey’s girls in order to anticipate all of my kid’s next stages in life.
Tracey arrives while we are on the veranda.
“How much are we cutting today?” she asks after catching up.
‘s-h-o-r-t,’ I spell.
I have enjoyed long hair most of my life. Think Jennifer Aniston and you can picture my latest and long-standing hair-crush.
“You’ll regret it.”
“You can’t put your hair up.”
“You have to cut it often to maintain it.”
I wish I could go Sinead O’Connor but I hear them and reluctantly agree to a trim.
Tracey awkwardly cuts around my big chair and my inability to move.
Later, Jo tries to calm my rising panic over my unintentionally abandoned clients and tells me it’ll be okay. “There’s another survivor like you, in Canberra. I’ve been in touch with her and she went home after eighteen months.”
Eighteen months? I can’t imagine eighteen months. I can’t imagine ever. I’m desperate. I’m lost. Common sense deserts me. I panic again, but I can’t express myself.
Shane tells me how supportive and generous his work has been and I’m overwhelmed. For a law firm like Turks Legal, I’m astounded and forever grateful.
In the days to follow, I find a moment alone with Shane (it’s been Central station) to ask Shane how Dad has been. Shane tells me he has dropped everything to help. I feel so stupid. What an idiot. How could I have allowed such a stupid thought, that Dad had abandoned me, to fester? There is egg on my face.
The next morning a young girl with a short brunette bob and glasses approaches me.
“I know this is difficult. You’re used to being in control. Now you need to rely on others. I’m here in case you need anything changed with the nurses.”
There are so many things I want changed. Small things. I’m sure she regrets the day she walked into my room…
My list of grievances is long.
Later that day, the nurses and wardies roll me on my side to wipe my arse clean. I’ve done a shit and I’m no longer able to wipe my bum, so the nurse does. Man, nurses aren’t paid enough for this. As the nurse wipes, I fart in her face. Everyone bursts out laughing while I’ve made one of my first sounds. I hope that doesn’t smell. I begin to realise I can’t hold in a fart any more. Farts come out when they want, whether I like it or not.
When the job is done, as the wardie leaves he turns to us and asks: “Card trick?”
My nurse and I nod.
He fans out his cards and asks my nurse to pick one. She whispers her card in my ear.
He then proceeds to pull out the number my nurse chose.
Wow. He’s in the wrong job.
One morning a nice English lady is there when I wake and I can’t see my usual nurse. My heart races. Where’s my nurse? My throat tightens. She knows me and can use the communication board. Not everyone can manage that. She’s special. My nurse walks in. My pulse steadies. I learn apparently an ‘AIN’ is assigned to me to aid in my “communication”.
Very quickly however, I learn I only communicate effectively if the person I’m communicating with knows how to spell. Vowels are an essential part of the English language. Not knowing vowels makes communicating with me arduous … at best. I need to spell right and hope for the best.
My fancy is tickled. Sure, send me an AIN to “communicate” who isn’t strong on written English.
Every second morning I “transfer” to a bed bath, by a method resembling a miniature hovercraft blown up with a vacuum cleaner pump. The deflated hovercraft is shoved under me and nurses proceed to inflate it. I’m lifted to the bed bath and the hovercraft is removed. My nurse for the day wheels me to what I nickname the “torture chamber”—the bathroom. The room is small and we barely fit.
“You’d prefer female nurses.” It’s a statement.
I don’t care.
I’m a rag-doll as my arms are pushed and flop through the nightgown sleeves. The nurse showers me holding a hand-held shower-head. I’m naked. The humiliation of the moment burns. My dignity flies out the window, never to return. Yet there is nothing to do. I suck it up. My childhood dreams of being dressed around strangers are shattered. I don’t care. What must be, must be.
I hate my back being washed—I’m moved onto my side and am on a slippery, precarious clifftop, especially as the nurse and AIN rub soap all over me. I’m going to slip and face-plant on the tiles. Blood will go everywhere, teeth through my lips, unable to put my hands out to break my fall.
The bed is big and blue. A stretcher on wheels with a vinyl top. Waterproof.
My neck is so weak. I am thrown around like a dead animal whenever they wash my hair. My neck cracks and hurts, especially when it reaches the limit of a natural neck-bend. I can’t stop it bending. My neck just flops. Ow. I don’t think the nurses can do anything. It’s just the way it is.
I come to know the white ceiling in ICU and the bathroom by heart—every crack and fire sprinkler or alarm. My favourite nurse swears I don’t get any hospital infections because I’m kept clean. By a fluke, I just possess a good immune system. At least I’m blessed with that! She takes my temperature. I overhear her tell Shane it’s is 37.7 Celsius. That’s near normal. Hopefully, I’m on the slippery slope back to health. I’m not worried at my temperature. I don’t think about my temperature. My temperature is taken three times a day.
My temperature must stabilise after my body rushed to the edge of death and back. Somehow I survive—the effects are telling. So lucky.
Or am I?
Anxiety suffocates me for fear the nurses may need to suction me as they shower me, and we won’t make it back to my room in time. They can’t suction me in the bathroom. Who designed this? I just experienced how fragile life is, so I turn into a hermit. I don’t like to leave the security of my room—my cocoon and centre of my world.
The anxiety becomes too much. I tell a doctor. She tells me she can prescribe a drug, but it’s addictive. She recommends against taking the drug. I don’t care. The anxiety puts my nerves on a razor’s edge, night and day. I’m like a drug addict. I must take the drug. Now. Damn the consequences. I can’t live like this. I can’t cope. I ask the doctor to bring some immediately.
Morning light fills my room as the nurses’ struggle to rouse me. So sleepy. My eyelids are so heavy. The thing is, now I’m ready to face daily life. I’m buoyed. One small win in my tiny, screwed up world. My dose is adjusted. I feel more like myself. Better than I have in days.
A doctor comes and sits by my bed. “Squeeze my hand,” she says as she grabs my hand. Slowly, I start to squeeze. I use all my effort to try and force my hand into a fist enclosed around her hand. I can’t grip her fingers for the life of me.
Still, I’m excited. My left index finger is moving as normal. Small pleasures. I’ve got to find and grasp onto anything positive. I’m eager to share this change with her. I wiggle my finger. She smiles. “That’s good. What happens now all depends on how determined you are.” I’m pretty fucking determined. Her words are so far the closest to my hearing if any recovery is possible.
I push the doctors for a second MRI. They agree but warn me not to be disappointed with the result.
Mid-morning a few days later, and my nurse joins me as a wardie pushes me downstairs to the MRI room. Once there, I’m treated with kid-gloves. My bed is wheeled next to the MRI bed. “One, two, three,” someone says and a group of people heave me, holding my sheet corners, and lift me across beds. The MRI bed is narrow. I’m anxious my right arm will flop and hang off the side. In truth, I can’t remember how my arm stayed put, but it did. This is the type of memory problem I face. Perhaps I’m strapped in?
“Wiggle your toes if there’s a problem. I’ll watch behind the glass,” my nurse says. She points to a glass wall about waist height and the office behind the glass wall.
“So, you don’t move,” a doctor explains as he puts something like a head-brace on me. “This will take at least thirty minutes.” I’m slid into a tiny space.
Moments later, the banging starts. I try to relax but I can’t. I watch the staff through a tiny mirror, half the size of a car rear-vision mirror. I focus on them. They chat in the room behind the glass. How nice to simply chat. What a luxury. How good would it be to talk? I last until I guess there’s maybe five minutes left. Then the small space presses down on me. I struggle to breathe. With all the effort I struggle to muster together, I wiggle my toes. My toes actually wiggle. The sensation of my body acting when my brain tells it to move is a novelty.
There’s no response. I should have guessed. I’ve watched them talk and I scrutinise the mirror again. No one sees me. My nurse still chats with the doctors.
Fair enough. I’ve passed through life okay until now. Anyone would look away. That’s a normal human action. To not keep looking is normal. I try not to panic. Surely there can’t be much longer? I concentrate on breathing slow. In–out. In–out. In–out. I remember being a kid in our old Valiant and mum saying “It’s all in the mind. Tell your brain: ‘you’re not going to be sick’.”
The banging stops. The doctor wheels me out and takes the head brace off. The MRI’s over. Hallelujah! “There’s some blood flow,” the doctor says.
Back in my room I wait to hear more of the results. I want to see the picture of how much “some blood flow” means. Nothing happens. I can’t even tell if my family know more than I do. I hear nothing, even in passing.
I overhear nurses saying a new patient arrived from another hospital and no one showered them in six days. That’s slack. No one should endure that, unless there are extenuating circumstances.
Everyone thinks I like my bed bath. Little do they know! I hate it, but I tolerate it. Unfortunately, I recognise the need to keep clean. While in my early twenties, an older work colleague whispered in my ear “you smell.” Ever since, I’ve been emotionally scarred. Paranoid.
I accept my wounds must be kept clean despite the sting.
The days become a blur. One morning, a petite blonde with shoulder length hair, an aqua green top and navy pants, walks in. She introduces herself as my physio and begins to move my limbs, to “range” them. Next, she tells me to take a deep breath and hold it.
I can’t. I can’t breathe in.
I try. I breathe in reverse. Or so I feel as though I do. My brain possesses no concept of what to do. I breathe in an involuntary breath when I do breathe. I try to hold that breath.
She counts, “Five, four, three, two…”
I expel with a whoosh. I can’t hold any longer. I lack any strength in my lungs. We try again. Ten times, but the result is the same. I can’t hold my breath. Every time.
Afterward, she makes me special boots to prevent “foot drop”. She explains “foot drop” prevents my foot from being flat in order to walk. I’ll never walk, but I’ll never stop trying. My muscles can shorten if left unsupported in bed and my feet are too weak to naturally hold my foot in a walking position. I don’t want to try walking like a ballerina.
Although I can’t see ever walking again, I don’t want “drop foot”, either.
I wear the boots out of bed.
Before nurses come in to start my day, I’m all alone. I listen to the relative silence, punctuated by moments of cascading ice. I visualise a nearby tea room with a fridge with an ice machine. I realise how thirsty I am. I want a piece of cold ice to melt in my mouth, slaking my thirst. I long for a Coke.
One of the next things I say, amongst thanking staff for saving my life, is ‘c-o-k-e’.
This request is laughed off. Apparently, I get my fluids from the feed tube in my nose.
My neurosurgeon comes by my room the next morning. A tall guy with greying hair and distant but polite bed-manner. The sort of guy you’d want as a friend. I like him. He explains my stroke is a mystery. At best guess he thinks my running for the train with a heavy bag together with my double joints caused a kind of whiplash. The tear caused a blood clot which travelled to my brainstem. That explains the headache at the base of my neck. Wish I’d taken aspirin. Shane had offered me something but I dismissed his concern. Shane will love being right. Score one to Shane.
Shane is given permission to let me suck three pieces of ice a day. Yay. When he forgets a day, I’m crushed. I live for my three pieces of ice. I long for that cold wetness rolling around my tongue. I try to remain realistic. Shane puts the kids first. He is my kindred spirit. He’ll do as I’d do. While I’m looked after by the hospital, he’s getting the kids ready and out the door for school, washing, going to kid’s birthday parties, organising presents, homework, and he manages to fit in a forty-minute drive to see me. I’m not complaining. I do long for his presence and count the seconds he is present.
Shane does enjoy my dad’s help. Dad gives up his life in Canberra to move in with Shane. He visits me every night for at least a year, as soon as Shane comes home from work. Every night, I sense the world holds one constant.
Dad. I love Dad.
Shane is encouraged to swab the inside of my mouth with a sponge on a stick dipped in lemonade. As the sponge brushes against my tongue the fluid briefly dampens my thirst.
The next day my step-sister Catherine, whom I consider a sister, and her husband visit from Canberra. They are told a sunny room just became vacant and to grab it while we have the chance. Catherine asks and I agree. For the whole day, she painstakingly traipses between the two rooms, removing every picture and putting them up in my new room. Walking continually past critically ill patients all day can’t be pleasant. There are so many worse off than me.
By the end of the day my bed is pushed from my old room to the new. I immediately miss the sound of tumbling ice and quickly discover when the nurses have difficulty—the television remote doesn’t always work. I long for my dark old room. I become aware of a cloying sickness in the air.
The pain doctors come around to see me in my new room, a small herd of them in normal clothes. A cluster of importance, dressed eclectic. They ask me to rate my pain on a scale of one to ten where ten is the worst. How do I know? I guess my pain is around eight.
They nod and say they’ll organise pain relief. I smile.
I agree with my nurse for the day to go explore the hospital with her. I’m transferred to a wheelchair. All of a sudden, my world spins again. I can’t move my arms this time to grab my head.
This is it. This is how my life ends…
My face must look dazed.
“Rachel?” My nurse peers at me with concern.
I can’t answer her.
As quickly as the moment came, it disappears.
I flick my eyes up at my nurse. She’s oblivious to how I was brushed by death. We head out to look at the local pictures lining the hospital corridor.
That night my brother Mark visits with his girlfriend Claire. We begin a ritual of exercise, starting small. I need to blink super-fast as I count ten times. Each visit, we build on ten. Usually once a week. I try blinking. Closing my eyes once is nigh impossible. Ten times? I’m exhausted. We time each ten, to track any improvement every visit.
Next we exercise my fingers. Some respond easier than others. There is a tremor in most fingers. They don’t move as normal. Mark encourages me and excitedly says “the messages are getting through.” I hope Mark’s right.
I’ve spent two weeks in the ICU and this weekend is my daughter’s birthday. She is having an ice skating party and I’m a lonely Nigel in hospital while Shane takes everyone to the skating rink. Next day, the family bring in all her colourful presents, still wrapped. For the first time since that awful morning I see my kids. My beautiful kids!
We go onto the veranda and the table is covered with gift bags and presents, which she finally unwraps. For a nine-year-old to wait to unwrap presents she is given the day before—I’m so impressed she waits, and proud of her self-control. I bet she’s nagged Shane every five minutes to open her presents, and in no uncertain terms, he’s said “no”.
The Tour de France starts. Unfortunately, I end up watching it from my hospital bed rather than from my bed at home, and that’s only when the remote chooses to work after the nurses turn the television on and tune to SBS, the only station to cover cycling in Australia. Some nights the cycling is not turned on.
A small huddle of night doctors quietly makes the rounds at around eleven, a charming break from hospital monotony. Some are even dressed in green uniforms. I often “entertain” them, watching a snippet of the Tour if it’s on, while they ask if anything changes in my condition.
I’m told except for my immediate family, visitors are allowed only half an hour, and even then only in pairs, because the waiting room teems with close to thirty people. Even my Auntie, who’s flown down from Queensland, is forced to abide by the rules, and the nurses are as fierce as a lioness guarding cubs. I’ve a few friends and family visit from interstate. There’s no chance they can see me quickly when the waiting room is that full. The wait is long. Unfortunately travelling from interstate means nothing to the nurses.
Jo visits and offers to make a ‘thank you’ for the nurses. Something small. I agree. In a matter of days, she returns with a mock up design for me to approve. She’s made a light-blue heart with an orange butterfly and a silver glitter butterfly and stamped with “thanks so much”, all hung on an orange ribbon. I approve. The butterflies are mass produced—about thirty—and handed out. Some nurses wear them like a brooch.
During the course of one morning, I hear haunting singing gently filter throughout the ICU, accompanied by a pure, clear guitar. My family talk in hushed tones with my nurse. Clearly, they don’t want me to know what’s going on. They think I don’t realise what’s happening. I overhear there’s a sixteen-year-old boy down the corridor. Everything medical has been tried but he’s expected to die today. A peace falls over the ward for a greater part of the day. Finally, the singing stops.
I know what that means. I’m broken. I’m scared. I’m dejected. Life is cruel to everyone, eventually. The poor boy. At least I have lived a part of my life. He didn’t have a chance. Take me instead.
I know nothing of stroke, or what to expect. I’m a mushroom—in the dark. No one explains what to expect. I like to know what to expect. I drift back to the memory of my first pregnancy. A hopeful time. An anxious time. Elated. Also, a thud into reality as I’m first introduced to the hospital system. One of the few books I’m given I read till the front cover clings to the binding by a thread: What to Expect When Expecting.
There is no What to Expect After a Stroke.
Every stroke is so different. A mild stroke is completely different to a severe stroke, or so I learn. Life feels unsure. I don’t know what to expect next.
The speech pathologists who gave me the communication board also control what I eat and drink. They request to see, on camera, the damage my stroke caused to my swallow. I agree to go with them. I want to see too. We go around the ICU to a darkened room, made quiet as a ‘speechy’ closes the door. There’s an old-fashioned television on a stand with a VCR. They tell me they will record my swallow.
A thin black cable, like a television wire, is threaded up a nostril. The scraping is beyond uncomfortable as it slides down the back of my throat. I hold my breath, wishing the procedure over, fighting the continual need to gag. This is awful. I am handed a cup with blue food-dyed water. The speechies explain they’ll get me to swallow and record it to see if any of it slips into my lungs. I swallow. Please, let the dye go down the right way. We are glued to the television. Shane is there, too. All we see are pink, mushy insides—my throat. Some blue water trickles into my lungs. I’m shattered. I’m told that water is fast—it is a big hurdle they’d hoped I would have passed.
Later, my speechy sits opposite me as I sit in an old hospital wheelchair. She asks me to eat a spoonful of rice custard. I’m a bit excited. Who would think the prospect of food so exciting? I do. I smile, involuntary, big and wide. A gaping hole. I can’t control my mouth.
No matter what the result, there is a chance of real food afterward. Not the regulated spurts of stuff set by my dietitian being fed through the tube in my nose hanging on a post behind me. The creaminess of the rice custard is like velvet to my senses. Only, my tongue is so weak it can’t clear the rice granules in my mouth. It sticks in my teeth. My tongue won’t reach, try as I might. Everything I do is a failure. Why bother? This constant trying and failing sucks.
Ultimately my inability to meet this test determines what I eat. Mush. But hey, I try to look on the bright side. Mush is better than being tube fed and hooked up to a machine. Well I’m still connected to the machine but I’m allowed food too. I’m not on a normal diet. I can’t complain though … so I tell myself.
The next day the dinner trolley comes around to me. I never appreciate food so much. I drool as Dad feeds me. I’m a baby again. I don’t want to live like this. A burden. A big baby. Suddenly, I start to choke. I can’t cough. Food must have gone into my lungs. I didn’t feel food slip into my lungs. I thought I swallowed carefully. What happened? I struggle to breathe. Delayed, my involuntary cough kicks in. I cough, violently. Coughs wrack my body. Finally, I breathe. Sweet air. My arms fall off the pillows they rest on and Dad moves them back.
Shane arranges a special Skype call today. Earlier, he’d checked times with the west coast of America. He brings up Skype and adds Kate Adamson, a brainstem stroke survivor in America. She answers the call and I see her walk to sit down in a track suit. I’m heaps worse than Kate. I can’t differentiate between Kate in hospital and Kate now. I remember her positive encouragement. I’m touched. I’m thrilled.
Every few days the nurses change the bandage on my neck for the trachie. I need to lift my chin to expose my neck. Carefully, they pull the edges of the bandage from my skin. My skin pulls. A tepee until my skin tears free.
“Sorry, Rach,” a nurse says for the hundredth time.
I could title a book Sorry Rach, I’ve heard it so much.
Please be over. My skin is so tender. My swallowing hurts. I struggle to control my saliva. I dread changing my bandaging. Although I’m relieved to have the new clean bandaging on. It’s over … this time.
Every time the nurses suction me—part of my trachie—I cough so hard my arms fall off the pillows they’re resting on. A nurse gently places whichever of my arms is closest to them back on its pillow. I want to scream at them I have TWO arms! It isn’t hard people! Basic human anatomy. Don’t nurses get tested on anatomy to become nurses? The other arm just hangs, until noticed. Sometimes hours pass.
Dad arrives one evening carrying a U-shaped pillow. My neck can’t support the weight of my head when my bed is tilted at around forty-five degrees. We’ve used pillows to prop me up before, but now the U-shaped pillow slips around my neck and I beam at Dad. It’s perfect, and I start using it immediately. I come to think of it as “Dad’s pillow”.
I question Dad on the communication board. ‘w-h-a-t h-a-p-p-e-n-e-d t-o y-o-u-r t-r-i-p.’ There is no punctuation on my communication board. He was due to fly with my step-mum Anne on a holiday to Europe and the United Kingdom any day now.
“We cancelled our trip,” he says.
I laugh inwardly. I know Anne must be relieved. Despite braving it for Dad, she still hates flying.
The flowers start to arrive as news of my stroke spreads. I receive colourful arrangements in sunny oranges, yellows, bright pinks, reds and violets. They really brighten a drab room, albeit a relatively new one. We struggle to find a place to put them all. I can’t say if they smell, because my sense of smell is severely delayed. If flowers are held under my nose, I can’t engage the muscles to breathe in time. The flowers are taken away before I smell them. Not yet! No one takes that long to smell—except me!
My cousin brings in a roll of Cadbury milk chocolate. I can’t eat it, but I’m sure the kids will. Someone brings in my cork display of handmade cards (my hobby) and my tree stand for the cards that pour in. Being a part of Stampin’ Up! means I receive dozens of exquisite handmade cards—these are some talented ladies!
While Shane takes time off work and visits early one day, the ICU NUM comes in and nicely suggests some “before” photos be brought in and stuck to the wall in my new room. I don’t want to be reminded of what I’ve lost. Don’t do that, but I already have more important things to say—this doesn’t rate. Besides, my feelings are irrelevant. Don’t ask me, anyone. I don’t have an opinion. Life is about the living now. Really, I consider the photos are for them, not me.
A week before my stroke, Shane and I attended a wedding together. We were photographed standing together on a sunny green hill, the wind blowing my long hair over my face. Not unusually, I have my phone in my hand. Work demanded easy access to me at all times, hence the phone even at a wedding. I find the moment rare as we are captured in a recent photo without kids. My great-uncle Eddie blows up the photo to A3 size for me.
Photos are stuck to my walls. Cards are everywhere. Jo brings in a dozen cards each visit and reads them to me. If someone doesn’t know my address, they address cards to Jo. Little knick-knacks fill my tables. A grey ‘get well’ teddy bear. Lovely hand creams, bracelets of patron saints and charms. A small square frame, aqua, green and orange, with the quote ‘Optimism is the faith that leads to achievement’ by Helen Keller with paper and button flowers. A dark frame of pink paper flowers bordered with diamantes.
Glass sliding doors are at the front of the room. I could hear a pin drop when they close.
In an endeavour to maintain any flexibility, I start to adopt the “yoga” position. My back is flat on the mattress and I’m as heavy as a bronze statue. A nurse bends both knees out and puts my feet together. Ah, the stretch feels good, even though I’m showing what I had for breakfast under the sheets. My right leg is super heavy or I’m super weak—either way, I cope for perhaps twenty minutes. I prefer this position, except there are days I have a nurse unfamiliar with the position. Explaining the “yoga” position with my communication board is like pulling teeth. I stop trying.
A rash blooms on my upper thighs, both legs. While Shane visits, I’m lucky. He scratches my legs at the epicentre of a niggling, burning itch. Ah, that’s better. What heaven. He rubs cream on the hot spot and puts me in my “yoga” pose so the itch airs. Sure, hope visitors don’t come now. What a sight! While he’s gone, I’m not as lucky. I so want to scratch, but can’t. I try not to think of it. The itch drives me bonkers.
My family visit and take to me out onto the ICU veranda, an area that fits a twelve-seat table, a barbecue and a few hospital beds. We are up a floor or two. Trees line our limited horizon and our immediate view is the hospital loading dock. Brown brick buildings surround us. Still, I’m outside in the fresh air, a welcome break from constant air-conditioning. I sit in the corner soaking in the filtered sun. The roof has slats that tilt. Either the roof is a roof or the slats tilt to allow sun through. Today the roof is tilted. My sunnies are on, my eyes close and I savour the warmth on my face. I feel cobwebs pull across my face as the swelling in my brain recedes—perhaps some blood returns. I can only hope.
My step-mum Anne goes to find a microwave oven patients’ use somewhere inside the hospital in order to melt Lindt chocolate for me. In minutes she returns holding a white Styrofoam cup and plastic spoon. She dollops warm chocolate on my tongue.
During the afternoon, school mums I know visit. One particular mum is Sue, whose daughter has been friends with my daughter since kindergarten. She brings in choice photos of the actor Chris Pine. I love the movies he’s starred in, particularly Star Trek. To me, he plays Captain Kirk to a tee. Sue sticks his pictures to my wall. The girls tell me all the school news. I’m following the conversation, when Sue abruptly says “Oh! You focused on me a sec.”
My vision is dreadfully compromised.
That night, Iesha visits. We’ve been best friends since year nine in school. Over twenty years. We were maids of honour for each other and our sons were baptised together in Brisbane. Iesha reads Kate Allatt’s book to me over the course of a week of nights. Each time we are a blubbering mess. The truth behind Kate’s words is too raw.
Mum drives five hours from the country to see me. Her visits are naturally rare. She chats with Shane. They are on opposite sides of my bed. Automatically, I turn my neck to follow their conversation. I don’t even realise what I’ve done.
“Did you just turn your neck?” Shane asks.
I grin. Eyes up for yes.
When I first wake the next day—my vision is blurry. My heart races. My sight is going. I swear, it’s worse than yesterday. I immediately stare down the corridor and try to focus. I focus as far as I can see—ten times. My vision settles back to normal. Phew.
Jo visits during the day and talks to Shane on the phone. He must tell her I turned my head and to make me turn my head again. Moving is so hard but slowly, centimetre by centimetre—an inch is too big a movement—I do. She’s so excited. She almost jumps for joy. I’m happy to show off my new-found skill.
I am spoiled today because Jo and another friend give me a manicure and pedicure. I have complete trust when Jo cuts my nails. They grow so fast, they need a cut. Now I have lovely red-painted nails. I feel slightly human.
Later, the food trolley from the kitchen, just like the breakfast, morning tea, lunch, afternoon tea and dinner trolley, distracts me as I try to watch the clock, hidden behind the television. This trolley is different to the last. It’s more like a bigger version of an aeroplane trolley.
I can’t even watch the clock. I’m so bored. One of my main nurses says “only a man would design rooms with the clock behind the television.” Often. Whoever it is … I’m annoyed.
One day my favourite nurse visits the local library for me, because a friend suggests we try the toys there for a button I can use. While she nips to the library, we try the bells my friend brings in, searching for a way I can call the nurses. Tiny bells on a red elastic. There is no way I can press the buzzer. I can’t move my arms. At the moment, I can’t call a nurse if I need them. Face it, you’re going to die while they’re on their lunch break. Someone slips the bells around a toe on each foot. Even though there’s no chance I’m moving my right foot. As I ever so slowly wiggle my left toe, they tinkle—just not loud enough to sustain a weak ring, and the effort knackers me.
Soon after, my favourite ICU nurse strides through the glass sliding door. She holds a bag from the library bulging full of buttons. Who would have thought? The library? Clever. We discover I can use a big red button with my toe. I barely touch the button and it goes off. My favourite nurse saves: “Oi, this is Rachel, I need help!” as the ring tone.
Later we play the recording for Shane as he walks in. We earn a startled jump and a laugh.
Then my children discover the button. Uh-oh. They each record their voice, of course, and I have my button. Oh, the bane of the button. Each time I move, I knock the button off the pillows it rests on. At least a dozen times a time a day. The nurses puff up pillows to help the button stay in place. Placing the button right becomes a fine art. Every time I cough, my entire body shakes. The nurses place the button right in the right spot and unintentionally I move again.
As I hear friends approach my room one night, I rally. There is no way I’ll spend the rest of my life like this. I had muscles before my stroke. I will relearn them. Everything before my stroke, I took for granted. No more. That night I spell, ‘I w-i-l-l w-a-l-k.’ Everyone says, “Of course you will.”
Are they patronising me?
I hardly watch the television, as I can’t channel surf, and a lot of it bores or upsets me. In one instance, I watch the news and a man walks a tightrope over the Grand Canyon. He completes his walk and leaps to the ground, but the camera cuts off the ground. A nurse walks in front of the television. I can’t hear, either. He falls. Don’t watch. My heart skips a beat and boy, do I jump. I nearly hit the ceiling. Of course, I learn quickly he actually leapt to land a few feet away.
Every time I get back in bed, nurses place pillows under my arms (to stop them pulling out of their sockets) and pillows at my feet (to prevent foot-drop). Once in bed and they ask “are you comfortable?”, I want to say “I don’t know.” I can’t speak so I simply agree. Eyes up for yes. I may as well agree. I can’t express my discomfort. So how can they fix my position? Five minutes later, I need to move and can’t. Unless family visit, who know me and move me, I remain uncomfortable.
On the ICU veranda with my sunnies on, Jo offers to organise a fundraiser. My mind races. I can see going from two wages to one will leave the family in dire straits. I agree. Soon after, my cousin’s wife offers her help too. She can help Jo. I can’t communicate quickly enough. I’m expected to answer yes/no. I watch, helpless, as two fundraisers are organised. I can’t realistically expect people to attend two fundraisers. The decision is out of my control. Like everything. There’s no time to respond. They leave. I’m resigned. Weary.
I find the effort to communicate what I mean mentally exhausting. So often what I spell is taken the wrong way. Everyone does it, especially if I skip words or try to shortcut to an abbreviating meaning. I find I’m misunderstood no matter what I do. I’m quickly forced to only spell correctly and pray I’m not misunderstood.
Anyone asking me a question becomes a problem. They need to remember to ask me a closed question, one that needs a “yes” or “no” answer.
For example: “Do you want the television on Channel 7?” I can answer that with an eyes up or eyes down, as opposed to an open-ended question, such as: “What channel do you want the television on?”
Bit hard to answer the latter with a “yes” or “no”, don’t you agree?
Every week an X-ray team comes around the ICU, all white coats and brusque manners. They are the epitome of efficiency, pushing a machine as tall as themselves along the corridor and towards me. The doctors monitor my chest along with everyone else. They clearly stay on top of any pneumonia before an infection plummets a patient into a life-threatening condition. The threat of pneumonia is a daily fear for most of us. The doctors prop me upright and puff up pillows around me. They stick something behind my back, like an A4 size chalkboard, and line me up to take an X-ray of my chest. The board digs into my back.
I dread the day they visit. I struggle to hold myself ram-rod straight for the few seconds it takes them to take the photo. Without muscles, this is the ultimate balancing act for me. Any moment, I expect to topple over. My muscles point-blank refuse to work. I want to sit straight, only my brain won’t accept the memo.
The pain in my legs starts in ICU. An AIN often massages my calves, at all hours. My dad, brother, brother-in-law and best friend’s husband Yuggi also massage if they’re visiting. The pain hits with no reason or rhyme. No one can predict when the pain will strike.
My legs involuntarily jerk, but that doesn’t stop the pain, only relieves me for mere seconds. My legs cramp and tighten to a point of intense agony. They remind me of a birth contraction, but down my legs, rather than my belly and birth canal, with multiple moments of searing, blinding agony. They grow in intensity over a good few hours.
A nurse stabs a morphine needle into my thigh to hopefully settle my legs. The morphine lifts me up. I lounge floating on a cloud, all mellow. I feel like crying. The relief escaping the pain overwhelms me. I only have the needle a few times, jabbed into my thigh. I know the drug is dangerously addictive, so I stop. I put up with the pain. I don’t want to. I want a break from the pain. I want to sink into the relaxation the drug brings, but I can’t. I only have one body.
Soon after this episode, the doctors and I realise the drug Temazapam is the cause of my hallucinations and subsequent nightmares. The nurses tie a red plastic strip to my arm to indicate to everyone within the hospital that I can’t have Temazapam.
I’m out on the veranda one day having my ice when my nurse encourages me to swallow twice and clear my throat as I suck. Two swallows take all my concentration and we only manage a few tries before I tire.
The doctors come into my room the next day, and speak to me in sombre tones. They recommend I get a peg. A cut into my tummy, the size of a button hole, a simple surgical procedure. The tube in my nose isn’t long term. There is a risk of infection the longer the tube is there. They recommend no longer than forty-five days for the tube, and we’re approaching the forty-five-day mark. A peg strikes me as permanent. Could they prepare me for a nursing home? That’s where I belong. I am weaker than any able elderly person. The peg sparks a world of debate.
Do I or don’t I?
I am adamant. My side of the argument is simple—no. Everyone around me argues for a peg. “Kate Allatt had a peg,” they say. “Kate got hers out.” I’m not as special as Kate. I worry the peg is permanent. They wear me down. The constant nagging only stops when I cave after a couple of weeks. The doctors are relieved. They must think I come to my senses and they quickly arrange for a gastro surgeon to talk to me.
In readiness for my peg surgery, a few days before the operation I’m taken in my bed to another room. A doctor waits there with all he needs for a cannula spread out on a tray. Shane and the kids are with me. The kids wear their dark green sports uniforms. The doctor picks up the cannula needle, peers over my wrist for a vein, and jabs me—piercing my skin with a sharp pinch. The doctor moves the needle under my skin to try and catch a vein. My veins are uncooperative. The doctor jabs another spot.
My soft skin is a pin-cushion for his needle. Damn rolling veins. My then seven-year-old son is fascinated and watches intently. The other two kids are uninterested. Bored. The doctor finds a vein and tapes the cannula needle to my hand. A needle is under my skin, an odd sensation. I know a needle is under my skin. Sitting there. The needle moves sharply, digging in further when I’m pushed on my side for dressing, the toilet or cleaning.
Mark brings in home-made potato and leek soup for my dinner. I’m in heaven. Real food, which doesn’t disappoint. I savour each spoonful as Mark feeds me. I want to lick my lips but I can’t. My tongue barely touches my top lip and moving it from side to side is a minuscule movement.
The day I’m booked in for surgery for the peg arrives. I can do this. The doctors will do the surgery in my room. Immediate family arrive for moral support. While we wait, we make bets on how long before the peg comes out. I’m able to have mush meals now, so the need for a peg seems redundant. The bets range between four to eight weeks. After a few hours we get news. I’m bumped to another day. Urgent surgery takes priority over elective surgery. My surgery won’t happen today.
That’s hospital for you, Dad says.
A few days later, and “Take Two”. This time the surgery team bustles in, pushing equipment. I can tell by the way they move they’re on a tight schedule. Fast, efficient movements. The team quickly sets up and without much preamble I’m given a needle through my cannula to put me out. Blackness envelopes me, and for a few hours I no longer suffer the inability to move.
The next thing I know I wake to my room with no one. There is a burning pain under my left breast. I don’t want to move; my upper chest burns like a bitch. I can’t look at my peg. I must wait till my next shower to catch a glimpse. I can’t lift the sheets either. A cement block would be easier to lift, if I was able-bodied.
Every night, I listen to nurses crush my evening meds in a mortar and pestle behind my head. The crushed meds are then pushed through my peg straight into my tummy. I long for night. Sleep please, an escape from my living nightmare and the ongoing pain. Only—for me—the drug Tamazepam (before we realise it gives me hallucinations) lasts no more than four hours. After being given the drug at around ten at night, I struggle to sleep until around midnight.
I wake hot, sweaty and I’m wide-eyed by two to five in the morning. I can never go back to sleep. My day begins ultra-early. I watch the darkness retreat and sunshine creep across the linoleum floor of my room. One night my leg cramps pull me from sleep and my dreams blur with agony.
Soon the nurses and I notice a blister appear that looks as though a tennis ball hit me on the inside of my upper thigh. Stupid skin. So sensitive. So many times, people have commented throughout my life that I have soft skin. The price I pay for that softness is how easily my skin reacts to anything.
When pregnant with Harry, I didn’t need anything to react to in order to have my skin erupt in welts. The joys of pregnancy gave me an unexplained fine, itchy rash over my entire belly and thighs, and I mean everywhere. Back then, we discovered a brush was the best way to scratch. It shredded my skin to bits but it alleviated my itch.
Today my skin reacts to the tape that prevents my catheter tube being accidentally ripped out. The tape is over the tube to the inside of my thigh. When my nurse removes it, there’s a red, fleshy wound, a hole the size of a gaping tennis ball. We choose not to use that tape ever again—or, even use tape. Stupid skin.
My period starts today. Great. Super-fucking great. I tell Shane who passes the news to the nurses. My life is an open book. The nurse tells us sometimes the shock to the body after a traumatic event can stop periods for months. Not only do I suffer a freak stroke I must continue to endure periods? Typical.
The girls come the following night and they bring champagne. A speechy gives me a thickener so I can drink. The girls stir in the thickener and I bring the cup to my lips but pause. Medication. I indicate the cup be taken away. Darn common sense. I spell out, ‘s-o-r-r-y.’ When did I turn so sensible? The girls say they need to drive so they better not drink either. They laugh. We have a fun, giggly night (well, they do. I can’t laugh) all the same.
One evening Iesha visits while the Tour de France is still on. I take advantage of her presence to get the Tour turned on. Neither she nor my nurse know anything of cycling tactics. Even though we’re limited to my communication board I try to explain tactics. I start with something simple: ‘m-a-n i-n y-e-l-l-o-w i-s t-h-e l-e-a-d-e-r’. They look at me blankly. ‘h-e i-s p-a-r-t o-f a t-e-a-m’ More blank looks. ‘t-h-e m-a-i-n t-h-i-n-g y-o-u w-a-t-c-h i-s t-h-e p-e-l-e-t-o-n’.
“Okay…” Iesha says full of doubt, laughing. What was I thinking? This is hard to explain speaking never alone without talking. I make one more attempt: ‘t-h-e t-e-a-m h-e-l-p-s t-h-e m-a-n i-n y-e-l-l-o-w w-i-n’
“I’m sorry,” Iesha laughs, “I don’t get it.” My nurse laughs too. I give up. They dissolve into hysterics. I’d laugh to if I could. What a failed attempt.
One weekend, Iesha happily chats with a young physio while I’m being suctioned. Afternoon sunlight shines on us and shadows creep over the floor. The physio finishes but this time I can’t breathe. They are both oblivious.
My body shrieks for air. My head starts to spin. I’m faint. Woozy. The physio and Iesha have no idea of my dilemma. I can’t tell them. I wait until they notice my distress.
This is it.
They notice I don’t respond as I would normally.
I start to turn purple.
“Breathe,” the physio tells me, slightly panicked.
Finally, my lungs fill with clear air.
That was close. I don’t want that to happen again.
The kids and Shane, his mum and my brother-in-law brighten my room today with bubbling laughter and bearing lunch from the hospital café.
“You have to meet the ladies in the café. I can’t wait to take you in there,” Shane laughs. How can I? I can’t eat real food, just mush.
“The ladies always ask after you,” my mother-in-law Jan smiles. “They’re really nice.”
“Foot massage today?” Offers my brother-in-law Ben.
My eyes light up and I nod enthusiastically. Ben and Yuggi give the best foot massages. Ben finds a nice cream and starts right away. I’m spoiled. Pampered.
Shane is eager to help. When an ICU nurse offers to teach him how to suction my trachie, he jumps at the opportunity. Trouble is once he knows how and offers to suction me, I refuse. I have nearly died again from suctioning. I don’t want Shane to see me die. So, as often as he asks, I say no. I eventually relent after a dozen or so times, but only as it felt I wasn’t presented with any choice.
Shane tells me he’s spoken to my physio, as he’s keen to see me start rehab as soon as possible. My physio gets the green light from wherever to bring a tilt table into the ICU. A tilt table in the ICU is a rare sight to see, I’m told. It’s wheeled into my room, but as soon as I snap eyes on how narrow it is, my heart races. I don’t want to do this. I reason with myself because the tilt table’s necessary. No, I must. I steel myself and set my resolve firm.
The tilt table is manoeuvred flush beside my bed. I’m lifted across the yawning gap between bed and tilt table. My heart races faster the moment I land. I barely fit and my arms fall, dangling over the side. I can’t lift them beside me even if I could, because there’s no room. They hang. My physio straps me in. One strap. Two straps. Three straps, and I’m in. I’m asked if I’m ready. My eyes go up.
My physio starts to tilt me, bit by bit. “Are you okay? Not light headed?” he asks.
I feel weird being tilted toward standing after being horizontal in bed for so long. I indicate I’m fine. My arms. They continue to dangle. I don’t like my arms swinging. The unpleasant state of my arms can’t be voiced and I don’t want to waste my session by explaining my arms. I put up with it.
I’m tilted higher. I feel like a magician’s assistant headed up to have knives thrown at me. We finally manage ninety degrees. Shane takes photos. I can’t wait for this to end. I stand for ten minutes. Please be over. I don’t think I’m taking much weight but I still feel the blood rush around my body as the flow adjusts to the change of my position.
Hurry up. I hate this.
I come down. Thank God that’s over. How am I going to do that again? Because I know I must.
Days later, I’m up on the tilt table again and almost standing when my physio takes away my knee strap. Oh, holy hell. Supporting my knees, he asks me to squat. You’ve got to be joking! Despite a lathering of doubt, I comply and bend my knees. As I try to push into a stand, I feel my physio is doing most of the work. I’m not doing any of this. His hands cup my knees while we do about “seventy” squats.
I’m a failure.