Balance

Returning to full time study as a mature aged student is hard.  It is, on occasion, isolating, bewildering, frustrating and completely and utterly overwhelming – kind of like being a parent.

As one of the many people raising a family while at university, I’m trying to balance caring for my children with my studies, sustaining a relationship with my partner, getting enough exercise and finding time for myself.  I want to excel as a mother, scientist, partner and friend, and at times, my expectations are unrealistic, resulting in stress, anxiety and fears I’m failing at everything.

While, theoretically, it’s possible for me to make my kids animal shaped sushi for lunch each day, stick to a rigorous exercise regime, and publish prolifically in the best journals, it is about as sustainable as strip mining.  In reality, I craft elegant emails to my supervisors explaining why my research is not as far progressed as I’d promised, my kid’s teachers barely recognize me, dust bunnies the size of cats blow through my hallway and we are having toasted cheese sandwiches for dinner – again.

Life will always interfere and prevent me from achieving my career goals as rapidly as I would like, be it children, health complications, or other reasons, and as stated in an outstanding article in Science, we need to re-evaluate success and our priorities.

I need to accept that occasionally I’ll miss a school event due to work constraints, or after my son falls off the monkey bars, I’ll spend the night dozing in hospital lounger instead of presenting at a long anticipated conference.  My personal and professional life is managed the way a nurse triages emergency patients: which role requires my attention right now.

Borrowing an analogy of work life balance from the author James Patterson, imagine a series of balls representing work, family, friends and spirit being actively juggled.  Each ball is made of either rubber or glass and fluctuates between materials at different times.  If a ball made of rubber is dropped, it bounces back.  However, a fumbled glass ball may chip or even shatter to pieces.

The trick to balance is determining when a ball is rubber and when it is glass.

Em

Gravity is a great equaliser

Nothing beats the feeling of laying out first tracks after an overnight snowfall.

The ssssss sound of a board or skis cutting through powder, sending little arcs of white into the air, quiets the mind and nourishes the spirit.

It places you in the moment, which is rare in an age where so many moments constantly swirl around us.

Skiing feels free.

***

Feeling free can sometimes be tough in a wheelchair.

But, from his sit-ski, my husband can access mountains cloaked in winter beauty, providing a special kind of peace.

It’s not often that he does not feel disabled; is not treated as though he is disabled.

Yet he’s not disabled when skiing.

On the mountain he is just another skier.  Everyone is out to have fun regardless of how they make their way down the hill, and recognise each other as kindred souls.

Skiers are more likely than the average person to have a friend with a spinal injury, as outdoor pursuits like skiing, mountain biking and climbing are pretty effective ways to paralyze yourself, and as a result, treat sit-skiers with respect, admiration and simple acceptance.

Skiing is one of the few sports that is not changed too dramatically by a thoracic level spinal injury.  A good skier and a good sit-skier are capable of skiing pretty similar terrain, and the disability is not as limiting as it would be for, say, biking where arms can never compete with legs.

Gravity is a great equaliser.

***

For our first date, if you can call it that, we went skiing.

Kev was so much better than me that most times we skied together, he messed around on tele-gear, snow blades or a snowboard, resulting in tremendous crashes to my immense pleasure.

But sometimes he would ski just to impress me.

Sixteen years later he skis in a bucket and young punks yell, “You are &*$^ing sick man” from the chairlift as he show-ponies his way down a bumps run, showing off for my benefit.

Some things never change.

Em

The challenges of parenting with a disability

My six-year-old son told me last week that some kid at school said, “You have the worst Dad in the world because he is in a wheelchair.”

Almost hysterical, he was taking great gasping breaths as he told me.

My  son, for the first time, was exposed to the preconceptions surrounding disabled people.  And it fractured my heart a little.

In his mind “Dada is stronger than the Hulk”, and he couldn’t understand why someone would say his Dad was anything less than totally awesome.

A kid saying something mean to my son, allowed me to explain how some people, unfortunately, think negatively about the disabled.

“But why Mama, why do people think those things?”

Good question baby.

The kid actually articulated what a lot of adults also seem to think – disabled people are incapable of looking after themselves, let alone their children.

Disabled people not only have their own autonomy and competence, but also, their parenting capability questioned more frequently than able-bodied people.

“Is he okay to look after the kids?” a woman once asked me right in front of my husband – the children’s father!

When managing his daughter’s epic toddler tantrum, an old lady tried to lift her from his arms, assuming she was more proficient at settling a screaming child than a guy in a wheelchair.

Others have asked me “Is that safe?” motioning to my son sitting on Kev’s lap as he wheels along the footpath.

A lap he has sat upon since infancy.

Years ago, my father in law carried Kev in a backpack, down over slippery beach rock, lost his balance, flipped over backwards and landed upon his infant son.  Yet not a soul asked him if that was safe.

Being treated in a patronising manner is part of life for many disabled people, with strangers feeling compelled to push a wheelchair without permission in the belief they are doing a good deed, or spouting condescending comments instead of a simple “How’s it going?” Frequently, people direct questions that should be addressed to Kev over his head to me, such as “Does he need some help?”

Somewhere they seem to have forgotten disabled people are just ordinary people.  

Children learn from watching the actions and hearing the opinions of adults.  It is important that they learn to treat others the way they would like to be treated, not how they feel they should treat people because someone may be watching, or worse, may not be watching.

Having a disabled parent can teach children understanding, compassion and empathy,  about diversity, and that yes, sometimes life is hard.  A parent succeeding despite obstacles demonstrates resilience, teaches strength of character, and gives kids a profound appreciation for a strong and healthy body, which helps foster a realistic body image.

Children with a disabled mum or dad understand that disabled people are just normal people, worthy of respect.  And respect is something seriously lacking in our society today when the President of the United States thinks it’s okay to mock the disabled.

There may be limitations on their abilities, as there are on all parents abilities, but every disabled parent I know would drag themselves across the floor, if required, to get their kid a sandwich, use their teeth to hold a kid’s backpack on their lap as they wheel them to school, and do whatever else is necessary to give everything they can to their children.

Yes my husband is in a wheelchair, but he takes our kids camping, skiing and mountain biking. He teaches them about the natural world, space and astrophysics, buys them milkshakes if they ride their bikes all the way to the BMX track and back, and reads stories with a silly voice at bedtime.

But above all he loves them deeply and is always there for them.

It’s true that he might not do well in the schoolyard “My dad can run faster than your dad” competitions, but providing a lap for resting weary little legs is a pretty special gift.

And that’s something able-bodied parents just can’t do.

Em

How to take a shit in the woods (when you are in a wheelchair)

There are certain under-valued pleasures in life such as a hot water bottle on a chilly night, homemade Irish cream, and the simple act of taking a shit in the great outdoors that we do not give their appropriate due.

It was within a week of my husband’s paralysis that he lamented the fact that he would never take a shit in the woods again, which at the time, I thought was a ludicrous thing to obsess over.

What about skiing, sucking in your abs or walking.

While he was in spinal rehab, I remember looking through a bunch of old photos and one picture caused my diaphragm to spasm a little as my eyes lit upon it.  It had been taken the previous year at a campground on Stradbroke Island off the coast of Brisbane, Kev, XXXX beer in hand, sat on a blanket outside our small orange tent as books, bags and dinner dishes spilt out beside him and a large Malibu surfboard rested on a patch of bare dirt alongside the tent.

Quizzically, he looked directly at the camera.  And it felt like a punch.

To me the photo represented everything we had lost.

How do you go camping when you need a white sterile box packed with stuff that can’t get dirty and about half an hour just to take a piss? How do you wheel around dirt, sleep on a crappy 1 cm thick sleeping pad without pressure sores, and transfer to and from the ground or pick up the Leatherman when it falls down beside a campfire?

How the fuck do you camp in a wheelchair?

We had that question ringing in our minds, propelling us forward, when  a few months later we embarked on a four month camping and backpacking trip around Australia.

Travelling so early after injury was tremendously challenging, emotionally and physically exhausting, and almost imploded our relationship.  But together, we learnt that things seemingly lost to us, were still firmly within our grasp.  The life we had dreamed of living together was still there, maybe a little obscured, and at times we hacked through a thick poisonous jungle to find it, slammed by both anticipated and wildly unanticipated difficulties.

Travelling showed us that we could still do everything we loved – even if in a somewhat modified form.  Everyone’s challenge and manner of coping is different, but trying something new (or something old) despite the inevitability of the occasional failure, is exhilarating.

Figuring out what works to reclaim your life as much as possible after a spinal injury, and what sure as hell doesn’t, requires much ingenuity, patience and humour. Then once you think you have it all figured out, everything will change again, due to kids, illness or other factors requiring further thought and modification.

Nothing is constant except change.

Twelve years later we are still figuring things out.

While packing for a recent camping trip to Central Australia where we would be bush camping for an extended period and space was at a premium, Kev realised he would have to sort something to take a shit without any facilities.

As we were bemoaning the price and size of portable toilets from a disability equipment supplier, an old friend confided, to much ridicule, that his mum carried a fold-able camping toilet on every camping trip when he a kid, and  he didn’t learn to squat until he was a tree-planting twenty year old.  ‘It might work for you mate’ he said.

Somewhere in the desert north of the Flinders Ranges, I watched Kev wheel towards me.

“That was the first shit I have taken outside in over twelve years,” he said as he passed, dragging a shovel behind him.

“Oh yeah?  How was it?”

“Fucking glorious…”

Em

Ten Years On

Well, it is our ten year wedding anniversary this year.

In some ways I can’t believe we made it.  There were times we were both convinced that we wouldn’t and had pretty much parted ways in our minds.  Constant health problems can take a toll on a relationship. As can babies, particularly twins.

We’ve had who is more exhausted fights, and I just wish you were healthy and can stay out of hospital for three months fights, I want to live in Australia fights, and I’m tired and everything is your fault fights – I’m sorry about those.

A series of counsellors labelled us with euphemisms which pretty much meant the same thing: I was the monkey and hailstorm to your turtle and rock. We never really learnt how to talk about things without getting angry or defensive, so often we didn’t talk about them, and they just got worse and worse and then awful.

We are learning though and most importantly, we are both really trying.

I remember the way you asked me to marry you, in a parking lot in the foothills of the Rocky Mountains, and I was mad at you.

We’d had a picnic that day and I guess I expected you’d propose.  You didn’t though, because you wanted to ask me while we were skiing together.  Somehow that turned into a fight as always seemed to happen.

As we started to drive back towards Calgary, you did a U-turn and drove to the mountains instead. As I sat on your lap in the cool autumn air, you told me that you were not perfect, I was not perfect, and our life together wouldn’t be perfect, but that you loved me more than everything.

Then you picked up a pebble from the ground and using the ring from your pinky finger gave it to me and asked me to be your wife.

You were right, our life together has not been perfect. But there is no one I love and respect more or would prefer to have in my life than you.

Remember our vows?

I promise to be your lover, companion, friend and ally, your partner in adventure, your consolation in adversity and your accomplice in mischief. I will hold you in my arms when you need to be held. I will listen when you need to talk. I will laugh with you in times of joy and comfort you in times of sadness. I will love you for who you are and I’m proud to become your partner.

I mean them more today.

Em

The day our life changed

When I first met Kev at a ski hill in Western Canada, he was a 20 year old ski instructor with a cute accent and blonde ringlets, and neither of us thought our relationship would last past the end of the ski season.  But, four years later I became a permanent resident of Canada based on our common-law relationship.

Two months after that, while running geophysical surveys in the northern Canadian wilderness, he drove a motorbike off a cliff, fracturing his leg, puncturing his lung and breaking his back (T6/T7).

I was working as a body artist at a festival in Nelson, B.C and it was the following evening by the time I reached Vancouver Hospital where he had been airlifted.  The spinal ICU room was dim.  The only light came from the soft glow of seemingly infinite monitoring devices, breathing apparatuses and important looking machines that crowded the bed where Kev lay motionless. And around him, machines pumped, sucked, beeped, and kept him alive.  Dirt, blood and pine needles matted his long hair and his face, partially obscured by an oxygen mask, was scratched and coated in mud.

For the first time I realized he could die.

On some level I hadn’t grasped how serious his accident was and part of me hoped he’d be sitting up in bed reading a magazine, with a leg cast tethered to pulleys and ropes above his head, greeting me with a hearty “It’s so good to see you baby.” And it was not like that at all. He opened hollow bloodshot eyes and whispered hoarsely through cracked and bleeding lips,

“Don’t cry, pretty girl”

And a great heavy pressure settled around my chest and stole my breath.

We were given five days of hope before a doctor told Kev he’d never walk again.

Sheets of tears rolled down his cheeks, hands clenched and unclenched in his lap, and his mouth opened and closed, seemingly unconsciously.  His Adam’s apple leapt spasmodically and his lips formed soundless words.

He was unable to speak and I was glad, because I had no answers to offer.

I stood behind him and wrapped my arms around his heaving shoulders; felt the hiccups and the bubbling terrified hysteria underneath and I tried to squeeze the pain from him.  It was as though a chill icy wind wrapped around us and swept away all the joy in the room.

All the joy in the entire world.

That was almost thirteen years ago.

After a while we stopped speaking of recovery. When became if, and then was lost entirely. We went from thinking of the injury every moment of every day to barely thinking of it at all, and most of the time it is now forgotten in the daily rush of life.

But it took time. I was angry for a long time, angry at life and the perceived injustice of Kev’s injury.  And I struggled to reconcile myself with the changes in our relationship and roles.

It was not easy.

Yet it passed.  As do all things.

 

Em