Tag Archives: resiliance

Five Years Ago: A Poetic Reflection of my Spinal CSF Leak Journey

Five Years ago this week…

I fell from a small step ladder.
Five years ago this week – my life took a dramatically different turn.
Five years ago this week – I got sick and have never fully recovered.

Five whole years…

Of enduring
Of fighting
Of grieving
Of accepting

But also five whole years…

Of learning
Of growing
Of loving
Of living

One fall. One injury.

Changed so much.

My girls were just 7 & 10 the day I fell.
They were there watching me paint.
They saw it all happen.

The fall.

The getting up again.
The dusting myself down.
The continuing to paint.

The next 48 hours where their mum got more and more ill.
The constant medical, GP, A&E visits, followed by multiple hospital stays.
Seasons of me being stuck lying down flat for months on end.
Followed by the seasons (post epidural blood patches) of being upright all, or most of, the day.

They have seen it all!

The turmoil and struggle.
The wrestlings and pain.
Their mum so different.
Our lives forever changed.


Never to return to who she once was.

Lives dictated by multiple restrictions.
The never ending storm of tragic depictions.
We have had to learn how to ‘live here’ to ‘find life’ amidst all the challenges.
To find a way to live in, and through, the never-ending seasons of chaotic pain.

Sometimes life doesn’t look like we imagined it to…

We always believed I would get well!

In days…then weeks…then months…then years…

Surely I would get well again?
Surely I wasn’t such a bad case?
Surely ‘normality’ could and would be restored?
Surely the longed-for redemption would come?
Surely this, or that, treatment would work?
Surely time would bring the full healing that I need?

But ‘normality’ never came.
It remained elusive.
At times tantalisingly near.
But always on shifting horizons.
Never to fully appear.

The start of last year was another journey towards that goal.
Following a year of healing with a good trajectory. Feeling better, things improving.

Until that haunting plateau returned.

I again stubbornly kicked and pushed against it.
Determined – this time – to fully overcome.
As I tried to win the never ending bid for freedom…
I brutally whacked right into that figurative brick wall.
Running at full speed.
Determined to this time to make it fall.

It didn’t fall.

I did.


Shocked and dazed I crumpled into the mud – yet again…

Completely spent
Totally wrecked
Utterly broken

I dramatically relapsed in the Spring – physically and mentally.
I shouted and screamed internally – again.
I fell into the pitch blackness of total despair.
And I grieved like never before.

‘How am I supposed to keep living like this?
I cannot do this any more!’

Four and a half years of pain and struggle had taken their toll.
Four and a half years of fighting to be heard, and get well, had left its open wounds.

I had nothing left to fight with.

It was tough to come back from that figurative fall.

But we did find a way again.
In God we discovered a resilience that can only be found in Him.
His Words provided a way forward – an indescribable peace within.

There is always a way forward if we don’t give in.
There is always beauty to be found – even amongst the mess.
Always a light shining somewhere – even in dark places.
Always a deeper love to be discovered – even amidst intense pain.

IF we can keep following the light.
IF we can keep focusing on its radiating beauty.
IF we can allow ourselves to be guided into new horizons.

New mindsets.
Hidden joys.
Intense loves.


IF we choose to never give up…

Only then…

Can we find a new life.
Can we find a new depth of love.
Can we find new purpose.
Can we find pathways to new adventures.

If we will simply stay the course.

Who knows what tomorrow might bring?

Five years ago this week…

I fell off a small step ladder whilst painting.
Five years ago this week I tasted of the devastating debilitation of a spinal CSF leak.

I wouldn’t want to relive these past five years.
I wouldn’t want anyone else to experience those depths of struggle.
So I will fight and keep speaking out until our stories are heard.

Until change comes.

But I also know…

That I wouldn’t want to go back to who I was before that week either.
I am changed forever.
But the change is not all bad.


There has been something deeply beautiful about this impossible journey.

A profound way where excruciating pain teaches you what ‘living’ truly means.
A hard and winding path that brought many wonderful and inspiring people – whom I never would have known.
A wandering that has at times felt aimless – but has also led to glorious discoveries.
A stormy voyage that has shown me stunning new spiritual landscapes and revelations previously uncovered.

Five years ago this week I fell from a ladder.
Five years ago this week I got a life-destroying spinal fluid leak.
Five years have passed of leaking (& at times somewhat recovering).

But never getting fully well.

But regardless of the pain, the suffering, the seeming wrecking of so many many dreams.

I have lived.
I have loved.
I have learnt.
I have grown.
I have spoken out.
I have used my writing.


In the hope that one day things will be different.
Perhaps other families will be saved our pain.
Maybe one day someone’s similar journey will be easier.

Simply because,

I ran the relentless marathon first.
Refused to give up.
And told my never-ending story – despite all of it’s indescribable pain.

“I abandon my addiction to the certainty of life
And my need to know everything
This illusion cannot speak, it cannot walk with me at night
As I taste life’s fragility…
I can’t pretend to know
The beginning from the end
But there’s beauty in the life that’s given
We may bless or we may curse
Every twist and every turn
Will we learn to know the joy of living?”

(Looking For a Saviour – United Pursuits)

For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Please see this  May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic 5 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.