Present Imperfection

The NDIS has come front and centre this week.

And so it should. God know it’s hard enough on disabled people and their families, without the additional worry of how they will manage financially.

When you see comments like this (responding to this article by Stella Young):

Ashley of Darwin Posted at 5:51 PM April 30, 2013

$22,000 for a wheelchair? Really? a basic wheelchair? A brand new car can be bought for less… If you want all the bells and whistles you can stump the cost of it yourself. The government should only assist you getting the minimum you require to be mobile.

Or The department store fearing for its profits.

You really start wondering if we are losing our capacity for compassion.

But overlooking the lack of basic decency from both quarters, they are missing the point.

The reality is we are all a hairs breadth away from needing the sort of safety net the NDIS will provide.

And I speak from experience.

In 2007 my husband collapsed at home.

He was cooking (the Saint that he is) when I heard him call out.

I wandered in to the kitchen to ask him what he was shouting about.

But he was lying on the floor.

Convulsing.

The drawer from the bottom of the freezer lay shattered around him, jagged pieces piercing the skin on his neck.

I could tell by the clenched fists that he was having a seizure (my eldest was diagnosed with epilepsy aged 2, so I had ample experience).

As the paramedics attended to TS I took in the sight of my husband suddenly ill and vulnerable.

Unrecognisable.

He came round, eventually. But then seized again. And again in the ambulance.

The paramedics reassured me the whole way to the hospital.

“He’s strong, he’ll be ok.”

Do they say that to everyone?

With every minute he writhed on the gurney, my heart sank lower.

He seized in triage half way through a conversation with me. His face contorting strangely.

“Are you still in there? “I whispered in his ear.

He didn’t answer.

The doctor sent him off for a CT scan.

I knew they were checking for a tumour, or something.

While they did that, I sat in the waiting room, trying to hold it together.

After what seemed like weeks, they reappeared.  The doctor quickly offered relief with the words:

“All clear”

But TS began seizing again. They sedated him and I returned  home.

Lying in bed watching the clock, I waited for the hands to reach seven so I could call his parents and tell him that their surviving son (his brother had passed away in 2005) was lying in hospital.

His father said “but he’s going to be OK?”

I said yes, but in truth, I didn’t know.

I headed to the hospital, hoping to find him conscious.

And there he was. Propped up in bed, smiling.

I kissed his head and held his hand.

Then berated him for scaring the bloody life out of me.

And we tried to talk.

Except, he found it almost impossible to string a sentence together.

Words were jumbled or forgotten altogether.

Sentences ended at the wrong place.

The doctor told us his brain was “scrambled” after the heavy night of seizures and that it would “rewire” itself.

In time.

It was hard for me to imagine how that would happen.

“Prove it”, I wanted to shout.

And I began to contemplate the thought that my husband might be left with a permanent brain injury.

How would we cope?

He was discharged the next day, but it was difficult to have him home with the boys. They didn’t understand how daddy was home, but wouldn’t play.

In the end I sent him off to his dad’s to recuperate.

It was a long three weeks without him.

On his return, I noted how the medication to halt the seizures, had turned him into a zombie, prone to falling asleep in the early evening.

Unrecognisable.

Recovery was slow and he was frustrated.

He practised Sudoku, crosswords, anything to get his synapses connecting.

And eventually he came back to me.

The same man.

My beloved husband.

I know how close we came. I know that there was an alternative path that was laid out for us.

But I can’t bear to think about it.

So to all those that think they are immune, that they are OK, that disability rights don’t affect them.

Think again.