Tag Archives: Storm

Falling Into Grace

“Grace can’t be explained; it has to be experienced … grace always has a story.” – Kyle Idleman

Grace is a word that we are all familiar with. We might think of it as a quick prayer at the start of a formal dinner. Or maybe a popular baby girls name. Perhaps you might think of a ballet dancer or figure skater moving gracefully around the room. You may of even heard it talked about in church.

But as the quote above says – grace is so much more than all that. It is not simply a word, a short prayer or even a religious concept…

Grace is an experience!

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Over the past few years God has really deepened my experience, understanding and revelation of grace. Grace has become such a powerful reality in my life that even just hearing or thinking the word can often bring tears to my eyes, or tangibly move my heart very deeply, as I hear and ponder it.

To me, the concept of divine grace is one of the most beautiful things in the world!

This is mainly because I believe, know and have profoundly experienced – that divine grace truly is the ultimate foundational building block of unconditional love.

You cannot separate grace from love. They are fully dependant on one another. Unconditional love is only possible because of undeserved grace.

Of course, we are talking about a specific definition of the word grace. I am referring to the word as a Biblical concept, a spiritual experience. So before I move on, let me first attempt to describe to you what I SEE when I read, or hear, the word grace in this context.

In the Bible’s New Testament, grace is translated from the Greek word ‘charis’ which can be translated as God’s unmerited or undeserved favour and ability. To favour someone or something is to prioritise, show preference to, demonstrate a special kindness towards and basically give approval to that person or thing.

Normally in our day to day world we would show ‘favour’ to someone that we love more than others, ie. a spouse, child, family member, best friend, someone who has helped or shown us more kindness than others. We would rarely show ‘favour’ to someone who had been unkind, treated us badly or someone that we dislike.

Therefore we usually show favour (or grace) to people conditionally. We repay love for love, kindness for kindness, generosity for generosity, dislike for dislike, rudeness for rudeness, hate for hate. The way someone behaves or acts towards us dictates how we react, treat and respond to them in the vast majority of cases.

This is where ‘charis’ blows normal human behaviour and convention out of the water.

The whole point of the New Testament concept of charis is that it is wholly undeserved. There is no initial assessment about whether someone’s behaviour merits us favouring them. We decide to favour them – before we know how they will treat or respond to us. AND we choose to favour and show kindness to them DESPITE wrong, hurtful or negative treatment or attitude towards us.

Do you see how undeserved grace is the foundational building block of unconditional love?

Can you SEE how outrageously beautiful it is as a concept to me? However, the stunning nature of undeserved charis can never be fully explained in words. It has to be SEEN & EXPERIENCED. For us to truly get a life changing revelation of its glorious divine nature and intention you have to have lived through, and from, its awesome perspective. As the lyrics to this song show is so beautifully…

“And nothing ever LOOKED like this
The wonder of a world I missed
The clarity I find in GRACE
Never thought I’d SEE this way.
You’ve been there every time I fall
Been there through it all
All this time to SHOW me
The VIEW from here.”
– Stu Garrard (The View From Here)

Those words help to describe the profound transforming metamorphosis that occurs from the day, or season, that we truly begin to SEE via divine grace.

It revolutionises the way that we SEE the world. It completely changes our own perspective of God and humanity. We start viewing everything from the eyes of our hearts – rather than with our limited heads and minds. It is a wholly new ‘view from here’. And today I want to try and describe something of the view from the vantage point of divine undeserved grace.

“The view from here
So beautiful
It’s so beautiful…
… can you SEE it now?”
(Stu Garrard ‘The View From Here’)

The view from the outlook of grace is truly stunning. It is simply indescribably beautiful. As you look out at the world, you begin to increasingly see the beauty in each and every person you meet. Even when they are in a bad mood, even if they treat you terribly, despite their good or bad behaviour. You see hidden beauty within them and you long to reach, connect with it and draw it out from them. You feel a profound depth of love for them before you even meet or know them.

Undeserved grace is truly THAT radical!

Isn’t it beautiful?!

Can you imagine a world where everyone could see and treat others from that viewpoint?

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But I can also hear the cynics among you mumbling: “Well that’s simply unattainable idealistic ‘world peace’ rubbish – who on earth can love to that depth? How can you love someone you don’t know or have never even met ... if you don’t know them – how do you know if that person really deserves your love?”

And all true Jesus followers should quickly reply with a resounding…

“We don’t! – But that’s the whole point of grace.”

How deserving someone is of love is taken right out of the equation.

There is nothing they could do to make us love them more. There is nothing they can do to make us love them less. We simply love them because we just love them. Full stop!

Isn’t it beautiful?

But…you might say… is it really possible to live like that? With that radical view of the world? Seeing every person you meet as uniquely, but distinctly, beautiful?

It is ONLY possible if you have ‘experienced’ that undeserved grace and unconditional love yourself first personally. You can’t view the world like that until you truly see and experience that level of divine love from the source of perfect, infinite, Divine Love Himself – Jesus Christ! When people have truly experienced divine undeserved grace and love. It will naturally flow out of them like streams of living water – to increasing measure, to everyone they meet. You can’t make it, will it or force it to happen. It should just increasingly become as natural as breathing, for those people who have truly surrendered to God’s unconditional love and grace.

However, unmerited grace is not a one-off experience alone. That is where it begins. But it’s real beauty is seen when people experience an ongoing deeper and deeper revelation personally. Day by day. Month by month. Season by season. And as they do it will just naturally transform the way they think, feel and behave until they increasingly drip and bleed undeserved grace and unconditional love to everyone they meet.

That metamorphosis has to be one of the most stunningly beautiful processes to watch happening in both yourself and others. Once you have seen and tasted what grace can do in your own and other people’s lives. Once you have experienced the restful ease of it’s transforming power. When you begin to rise up and view the worlds valleys and humanities brokenness from the lush green hills of grace.

You are never the same again!

However, the hidden glory of that transformation is that you will only truly experience it mesmerising depths, IF you begin from a place of witnessing the true extent to which it is undeserved. In your own life first… then in others second.

The truth is you will only experience grace in proportion to how much you acknowledge the depths of your own brokenness and weakness.

The divine key – given freely via Jesus Christ – to unlocking this view of undeserved grace and unconditional love in your own heart… Is surrendering to and receiving it’s ultimate core revelation…

That you have done nothing and can do nothing now, or in the future, to deserve miraculous divine perfect love.

The moment you believe you have done something that helps make you worthy of unconditional love and undeserved grace, you have voided the whole revelation and experience. You cannot experience grace by earning it – you can only receive as the ultimate gift.

You can only experience grace when you see how absolutely undeserved it really is!

And that is also humanity’s biggest hurdle to receiving the life transforming experience. Because humans like to justify how good and deserving they are; of respect, life and love. They have believed the lie that has completely corrupted people’s understanding and experience of love in our world – that love is something you give and receive because of how much you have earned and deserved it. This is why human convention dictates that you love those who love you, show kindness to those who are kind to you, and dislike and even hate those who dislike and hate you. Which makes the most sense to our human minds.

However…

People can’t see that it’s just that corruption of love that has polluted and destroyed our world, it’s inhabitants and all our relationships. The world is falling apart because it doesn’t truly understand and hasn’t truly experienced perfect unconditional love.

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All this is because the truth is ‘weakness is the ONLY way’ to receiving that love. And unfortunately humanity hates feeling weak. We spend our lives trying to cover over and whitewash the cracks and crevices we ALL have. We will do anything we can to show off our strengths and sometimes go to any extreme to hide and cover over our weaknesses.

This results in our own ‘view from here’ being totally corrupted, polluted and full of both:

Pride AND shame.
Superiority AND inferiority.
Self-promoting AND self-hiding.
Self-prioritising AND self-loathing.
Arrogance AND false humility.

All of which will pollute and destroy perfect love.

Paul said in the Bible; “But he (God) said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.” – 2 Corinthians‬ ‭12:9‬

Anyone who has followed any part of my painful three year journey through a debilitating and devastating chronic illness will have heard and seen how it’s relentless waves have completely wrecked me again and again. I cannot begin to describe to you what has happened in my life over the past three and a half years. But perhaps I would say that, at times, it felt like a mixture of a devastating typhoon that ravaged its way through my life and attempted to destroy everything in its path. Whilst I sailed through its unrelenting storm in an exposed wooden rowing boat trying to not be completely sunk by the untamable wind and waves that seemed to strip me naked and constantly flood over me. On and off, I thought I was physically, mentally and spiritually drowning. Unable to cope or see a way through.

I can’t tell you how weak and vulnerable you feel when you are quite literally mostly bed bound and debilitated by a ‘life wrecking’, widely misunderstood, illness.

But as the never-ending storm raged and ripped through my life, stripping me of so many parts of my identity, dreams for the future and so much of what I could do, it revealed a deeper and deeper vulnerability. It exposed more and more of the real, naked, hidden and weak me. Until at moments I wasn’t totally sure what was left behind amidst the tatters of my old life.

Its destructive path at times completely overwhelmed me... but through it all... that still small voice of the Holy Spirit whispered…

“Weakness is the way”
“You can’t – but I AM can”
“Let yourself fall into My undeserved grace”
“Immerse yourself in My unconditional love”

And over time I began to SEE more and more of the depths of my Creator’s unconditional love – that could only be experienced through falling into and being completely immersed in His undeserved grace.

The old me who wanted to look, and be, so strong, the old me who struggled with pride and shame as the depth of her weakness was exposed, the old me who wanted to cover her nakedness with various worldly ‘fig leaves’ as Adam and Eve did after the fall…. Had to let herself be brutally killed off more and more –  so that I could experience His ever increasing grace.

All of my heroic self-attempts to keep striving to be strong, all of my ugly self-reliance that tried to fight the battle on my own, all of my projected ‘able, high-achieving, pretentious’ self-identity had to be brutally crushed and wounded.

… until I could again see that we can do absolutely NOTHING to earn or deserve God’s divine favour. We cannot add – even a morsel – to His unmerited ability or His unearned strength at work within us. 

“It would be so much more comfortable if God would keep us in our “strengths zone” wouldn’t it? But God keeps thrusting us into our “weakness zone” because it is only in our weakness that he is made strong”. – Christine Cane.

My Father, Lover and Friend… in His incomprehensible wisdom, allowed me to walk through the relentless ‘valley of the shadow of death and destruction’. So that I would learn to fall more deeply into Him. So that He could keep leading me like a Shepherd leads his scared lost sheep, up the greener, more peaceful, lusher mountainside. Up towards the higher ground where ‘the view from here’ would look even more stunningly beautiful than ever before.

My view of undeserved grace and unconditional love could only be widened and deepened when I truly realised that…

“It’s NONE of me… it’s ALL of Him.”

And that is what characterised His constant whispers to my soul throughout the storm…

“You can only do this through I AM’s undeserved grace. It’s My strength in your weakness. I didn’t build or design you to try and scale this mountain by your own human striving, strength and perseverance. I have allowed you to feel and see the depth of your weakness – so that you will see how much you need My grace. So FALL into My grace My precious, dependant, child and allow my SHALOM peace and completeness to STILL your heart again. And watch as you are saturated by My unconditional Love – so that when you look into the eyes of every person you meet, you will truly SEE with My eyes of pure unadulterated love.”

That is my ‘view from here’ which grows clearer and clearer each and every day.

That is why the word grace can cause me to catch my breath, bring tears to my eyes and deeply move my burning heart once again.

That is my story of undeserved grace.

That is what I need you to hear as you listen to my tragically beautiful tale.

Weakness is the only way to truly experience God. His grace can only be received as a mind-blowingly generous undeserved gift. His unconditional love is given despite our faults and failures. So that when we receive it – it will overflow to everyone we meet. In the stunning form of unconditional love for ALL people – regardless of how they feel about us in return. 

The view from here is so very beautiful. It’s so beautiful… can you SEE it now? 

“Christianity is not primarily a moral code but a grace-laden mystery; it is not essentially a philosophy of love but a love affair; it is not keeping rules with clenched fists but receiving a gift with open hands”. – Brennan Manning

Suffering into a Deeper Spiritual Awakening 

“Any great calamity in the natural world – death, disease, bereavement – will awaken a man like nothing else could and he is never the same. We would never know the treasures of darkness, if we are always in the place of placid security.” – Oswald Chambers

If you have ever faced pitch black darkness – you know how hard it is to get around. In that place, if you want to get somewhere, you will have probably also experienced the desperate longing to discover more revealing light.

We tend to fumble around in darkness, utterly lost and insecure about where our feet should go. We have to move so slowly. Feeling our way around and through. Hoping to find a flicker of light, some moonlight, a torch or that revealing light switch that should instantly show the right path ahead.

In pitch black darkness, we all know that we must move towards a source of light to find a way out.

I can still vividly remember being on holiday in Menorca years ago – when our kids were small. We were staying in a small villa, which had shutters and at night was pitch black. One night, one of our small girls screamed out after having a nightmare and I literally jumped out of bed, half asleep. I instantly felt completely disorientated and enveloped by the confusion of the darkness around me.

Where was I?
How could I reach my screaming child?
Where was that light switch that I desperately needed?

In the pitch black, fear and anxiety often overwhelm you. Especially when you face the urgency of trying to get to your screaming child. In that moment I felt completely and utterly helpless as I felt the walls, trying to recall where that light switch was.

Eventually – after fumbling around for ages – I found that precious switch. With it came a stilling burst of light. My panic began to subside as I could see the way to reach my distressed little girl in her own room. And as she felt my presence in the light, as I held her in my reassuring arms and listened to her describe her scary dream – I was so thankful for that light.

The same is true in our lives.

Times of deep darkness disorient us. We can panic and become anxious as our way forward is hidden. We might fumble about trying to find a source of light to make the path ahead clear. We can feel desperate – longing to discover even a flicker of light.

Darkness quickly feels enveloping and all consuming. Its black fog often starts to seep into every area of our thoughts, emotions, actions and lives. We can’t seem to shake it off. Its mist covers everything we do. Until we feel like we are slowly being sucked to its desolate and empty core of despair.

And as it does… the desperate longing and need for light increases and intensifies every hour of every day. Until we know the flicker of a flame – ‘a little hope’ – is not enough anymore to guide us through the dense fog we are immersed in. We need a more powerful light – a more ‘substantial and secure hope’ – to get us through and illuminate, reveal and secure the path ahead. 

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But it is also in the ‘deep darkness’ that the ‘treasures of darkness’ are waiting to be found. For it is only in that place that we truly see how much we long for and need the light to survive. It is only when our eyes are blinded by the darkness that we fully realise the depths of our desperation and longing for the light to again truly SEE!

The past three years, or so, have been the hardest physical, mental, emotional and spiritual challenge of my life. My journey through an utterly debilitating chronic illness following my accident in January 2015 left me feeling more broken and weak than I ever have before.

And yet…

I have increasingly discovered that ‘broken and weak’ is the avenue God uses to draw us more deeply towards Him. It is in true human desperation that we realise how little strength we really have alone. Weakness, and the subsequent new level of humility it can usher in, is always the path to discovering just how deeply we need God.

But the stark reality is – the intense journey of brokenness is truly a painful and raw place to walk. Where layer upon layer of self-sufficiency, self-security, self-identity and self-confidence are brutally peeled away. Leaving us more and more exposed in our human ‘naked’ vulnerability and fragility. Even as you begin to tentatively emerge and ascend out of the valley of deep darkness, you can still feel very battered, bruised and disorientated from the utterly exhausting and often overwhelming fight.

Finding your way through the darker valleys of life, although intensely difficult, can also be an exceedingly beautiful journey; as your heart is softened, opened and humbled like never before. IF – and only IF – we truly invite God into the hidden depths of our vulnerability and pain.

It is only then that we discover and SEE the light of His love,

More intimately.
More stunningly.
More remarkably.
Than ever before!

“The Lord is close to the brokenhearted; he rescues those whose spirits are crushed.” – ‭‭Psalms‬ ‭34:18‬ ‭(The Bible)

It has not always been easy on that relentless journey through life’s darker valleys. There have been moments of anger at God. Thoughts of betrayal. So much lack of understanding about what was really going on. I have had to wrestle through intensely difficult questions and thoughts.

I needed to ‘discover more of God’ in a FAR more real – and yet gritty – way. 

I have also had to come to a deeper acceptance of the fact, that we all currently live in a ‘broken world’. And that it is probably not going to change, for many of us, any time soon. 

The world was originally created perfect, with God, humanity and creation living in perfect Shalom’ (peaceful) completeness, wholeness and harmony. But ever since humanity decided to do things ‘their way’ rather than the ‘Creator’s way’ in the garden of Eden. The ‘completeness and harmony’ of creation has been fractured and has been subsequently breaking down & slowly falling apart. Sickness, disease, genetic deformity, natural disaster, selfishness, rebellion and pride all entered the world as a consequence of that ‘fall’ and separation of humanity from the Perfect Designer of the universe.

It doesn’t mean God wanted me – or any of us – to be sick. Or that He caused me to fall that day to teach me a lesson. Sickness is just part of our broken world that is groaning to have its ‘Shalom’ completeness restored. God wasn’t the ‘author’ of my sickness, but He does promise to work with our fractured creation and turn it around for my good.

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” – Romans‬ ‭8:28‬ ‭(The Bible)

Over the past few years I have increasingly ‘groaned’ alongside the whole of creation for the ultimate redemption and restoration of the Shalom. Matt and I have also never been more aware of the deep, yet at times exceedingly painful, tension that exists between the ‘now’ and the ‘not yet’. Between God’s perfect kingdom and the current world in which we live.

This life is our ‘in the meantime’ life…

Yet the promise is that we can also begin to increasingly experience the ‘not yet’ perfect kingdom of God – His Shalom – in the ‘now’ through Jesus Christ. Jesus broke into His fractured creation to reach broken humanity. He came to live in the centre of the tension – as one of us. To see and then experience the deepest and most painful suffering here – to bring the ‘not yet’ of God’s glorious kingdom into the broken reality of creations ‘now’.

God’s complete ‘Shalom’ (perfect, whole life, restoring, enveloping peace) is what we ALL yearn and long for in the depths of our spirits and souls. Especially in the midst of suffering. But it is not just a ‘fuzzy’ feeling of ‘inner peace & calm’.

‘Divine Shalom’ – is so much more!

It is the stillness of our entire being – even amidst the storm. It’s illuminating light – even when everything appears dark. It’s the divine ability of undeserved grace – displayed through our human weakness. It loves us whole – in the reality of our brokenness. It is perfect completeness – in the midst of our imperfection.

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It’s so very hard to explain to you – with simple words – what has happened to me spiritually over the past three years. How can mere words describe the indescribable?! The only way I can explain it to you is that it was a profoundly deeper ‘spiritual awakening’.

I now SEE with new eyes.
I now HEAR with new ears.
I now FEEL with a new heart.
I now THINK with new wisdom.

My own human ‘nakedness’ of weakness and vulnerability has been exposed and uncovered to a much greater depth. And it was in that place that I found more indescribable divine Love waiting patiently for me. It was as if, all the way through my journey of brokenness and pain, I was being drawn further to seek and discover, being taken deeper to search and find.

It was only when I saw and felt the depths of my weakness and inability that I experienced the glorious wonder of His strength rising up within me. It was only as my self-reliance was brutally crushed by my inability to cope, that my dependency on Him grew so much stronger. Until from deep within the broken clay jar vessel of my life I cried out to the one who created me…

“Make me whole again Daddy.
Then shape and fill me anew, Holy Spirit.
Mould me into Your Divine image Jesus. 
Nothing else really matters… All I need is You!!”

I had again reached that intimate place of deeper surrender. 

When the darkness intensifies – our need for light increases. When blindness envelopes us – our longing to SEE truly grows. When our inner being is parched and empty – our spiritual hunger and thirst becomes more desperate. When the world can only offer silence – our spiritual ears long for His eternal song.

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When trying to describe spiritual – awakenings, encounters or experiences. We often use ancient images, words and metaphors. That to some might sound ‘cryptic’. To others may be simple ‘poetic words’. But to those of us who have truly tasted and experienced the eternal immeasurable love of God – Father, Son and Spirit. To those who have discovered Him waiting for them in their deepest brokenness and pain. To those who have seen His mesmerising light in the darkness. To those who know they cannot live without His beautiful grace…

Such words truly connect with the deepest longings of our hearts. Desires that we know nothing in this world can even begin to satisfy.

I wrote these words about my recent struggles to inspire us today. So that – together – we can again perceive the divine call to our souls – in the midst of suffering – to stretch further, to reach out deeper and uncover more of the dazzling light of His Truth, that will enable us to SEE and experience more of …

…the stunning, transcendent, everlasting – yet intimately personal and experiential – Triune GOD

Who is pure unconditional LOVE.
The Author of undeserved GRACE.
And the central beating heart of the perfect infinite SHALOM.

“If I find in myself desires which nothing in this world can satisfy, the only logical explanation is that I was made for another world.” ― C.S. Lewis, (Mere Christianity)


Click here for a great video explanation of the Hebrew word ‘Shalom’

For more posts about my three year battle with a spinal CSF leak – please click here or click on the CSF Leak tab at the menu above.

Choosing To Let Go…

“Today is mine. Tomorrow is none of my business. If I peer anxiously into the fog of the future, I will strain my spiritual eyes so that I will not see clearly what is required of me now.” – Elisabeth Elliot

That is the lesson I am trying to live out every day at the moment. To embrace each day as a gift. I am who I am and can only do what I can do in this moment.

If I am always waiting till tomorrow, I will not fully embrace today.

I have been unwell for 2 years from a spinal CSF leak. Every day of that 2 years I have felt unwell. Some days more than others. But each day is full of challenge.

I never imagined how hard it is to live like this. How deep you have to keep digging to stay sane. It is definitely one of those things you can only fully understand once you have experienced it.

It’s tough.
Every day is a battle of sorts.
Some days we have to fight harder than others.
Persevering can just be so very exhausting.
There are moments it’s hard to muster up the strength to face the new day.

But what choice do we have other than to keep on taking hold of each new day and finding the opportunities here?

Some days are exhausting.
Others go that bit more smoothly.
Some are just plain tough.
Others have such beautiful moments within them.

But whatever the day brings I have to keep on walking forwards. Placing one foot in front of the other. Accepting the limitations whilst refusing to let them take me over.


If I am always waiting till tomorrow, I will not fully embrace today.


A big lesson I have had to learn is the ability to LET GO. Everyone reaches a stage on their journey with chronic illness or any other long term trial in life where you have to accept your current reality, let go of your old ‘normal’ life and choose to make the most of your life and what it looks like HERE today.

We can still hope for a better future, but not at the expense of living today.

Letting go is not an easy process. It’s a bit like grief – you can go through various stages to reach that point of acceptance. It is often painful. It’s choosing to say goodbye to who you once were and accepting the reality of who you are now. Not knowing when and if things will improve.

It’s the day you decide that you have to keep living within the uncertainties, the limbo and make the most of the reality in front of you now.

It’s choosing to keep going whatever barriers are thrown up before you. To get up when you fall down and to gather up the pieces when you feel broken again and again. To choose to keep on living.

It’s a letting go of the old to discover and embrace the new.

My faith helps a lot with the process of letting go. Over the years I have learnt the daily discipline of surrender, of saying to God – I am letting go of my life and future, please take control because I can’t do this alone. It is allowing His love to be my strength in weakness, my peace in the midst of the storm and allowing my struggles to develop in me more compassion and love towards those around me.

This process helps to keep my heart tender towards others rather than my heart becoming increasingly hard. It’s about keeping my perspective right so that negativity, bitterness or blame don’t take root and destroy me. A daily reminder to keep believing that good and positive things can come out of times of pain. A decision to look outside of myself each day to see what what I can still do here. To remember that there are plenty of others walking a similar or even more difficult journey than me. People I can encourage and walk alongside. Taking hold of new opportunities even within the difficulties.

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There is a freedom that comes in letting go of the things we can’t change and choosing to take control of the things we can.

So each day I have to choose to let go of yesterday and the unknowns of tomorrow. I have to see what I can do today and embrace it. Not comparing it to what I used to be able to do or what others around me can do. If I look around me I will often see those who continue in their ‘normal lives’, and I can forget the many for whom – like me – their old normal is becoming a distant memory. The ones that choose to stand up, amidst the pain, to face another day and to craft out a new normal.

A normal that although perhaps tainted by brokenness, cracks and wounds that might still feel quite raw, has the potential to be even more beautiful that what went before. Because we now know how to just about weather the never ending storm and LET GO in the midst of it. To craft out new meaning and purpose that has to go so much deeper than ever before.

We have to fix our eyes on our own path whilst doing what we can to help, support and walk alongside others as well. We can walk our unique paths – with others – whilst not getting distracted or fixated on the differences between us. Instead we can choose to support one another and learn from what is similar and what is different. Celebrating the good times and weeping over the hard times together.

One thing this journey has taught me is that..

  • once you know what it feels like to reach the utter end of yourself
  • once you have felt the pain of wanting to give up and escape this life and it’s seemingly never ending battles
  • when you have watched your life be thrown up in the air and fall into pieces on the floor around you

…your heart becomes more tender to feel others pain too.

You can then reach out to another and together you can find a way to LET GO in the midst of the storm. We can embrace who we can be and what we can do today rather than always waiting for the storm to clear.

So each day I will do the best I can to embrace the here and now regardless of the unknowns, uncertainties and future battles. With the resolve to be the best and do the best I can in the midst of all the limitations.

And just let go of the rest.

“God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
enjoying one moment at a time…”
– Reinhold Niebuhr

To read more about my story of living with a chronic spinal CSF Leak click here.

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.

The Shame of Chronic Illness and Pain

‘Shame derives its power from being unspeakable…. If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to whither.” – Brene Brown

Over the summer I read Brene Brown’s fabulous book ‘Daring Greatly’. The book follows on from her famous TEDTalk on vulnerability that had previously inspired me to write this blog post on the power of vulnerability.

The full title of the book is Daring Greatly: How the courage to be vulnerable transforms the way we live, love, parent and lead.’ It encourages us to dare to be honest about who we really are, rather than trying to hide our weakness. It teaches that vulnerability helps us to live more ‘wholeheartedly’, connect more with others and that it helps us to overcome the destructive burden of ‘shame’ we all carry.

Her book really got me thinking about this concept of shame. 
It is not something we often think about.

I have been part of the Christian church all my life so I am used to hearing the word shame. We believe it is something destructive that we can overcome and that the grace provided by Jesus’ death and resurrection can break us free from its grasp.

And yet, this book caused me to really reflect on shame; what it is and what it really means. It inspired me to consider these questions;

Where does shame have a hold on my life?
How does shame effect my thoughts and actions?
How might shame be damaging my wellbeing & relationships?

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What is shame?

Words we often connect or use interchangeably with shame are words like: embarrassed or humiliated. It can manifest as feelings of inadequacy, guilt or regret. It’s something we often hide and cover up. We might self medicate to avoid thinking about it. We dread people seeing it.

And yet although shame is often seen as one and the same as guilt, I have come to see that there is a distinctive difference.

One of the main differences between shame & guilt is that guilt is the feeling of embarrassment or regret about something YOU HAVE DONE WRONG. We can feel shame, on the other hand, even when we have NOT DONE ANYTHING WRONG.

Shame is more connected to who WE ARE and how OTHERS PERCEIVE US.

“It’s a painful feeling about how we appear to others (and to ourselves) and doesn’t necessarily depend on our having done anything.” – Joseph Burgo

The more I thought about shame and how it manifests in my life, the more I became aware that it is intrinsically linked to the struggles I face at the moment. I began to see how shame had got a hold on me and particularly how it has effected me over the past year or so.

Finally I began to see and recognise that;

I FEEL ASHAMED THAT I AM BATTLING A CHRONIC ILLNESS!

There we go I have said it. It’s out in the open…

I feel ashamed that I am ill.
I feel ashamed that it has gone on so long.
I feel ashamed that I can’t seem to get well.
I feel ashamed that I cannot work and be busy like I used to.

I feel embarrassed to be sick!

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When I decided to speak up and write about feeling ashamed of being ill, it led me to google the words; ‘the shame of chronic illness.’ Through that search I found two insightful blog posts by a lady called Angelika Byczkowski in which she shares something of her battles with the chronic connective tissue disorder – Ehlers-Danlos syndrome (EDS).

She writes so beautifully about the humbling journey those with chronic illness and pain are forced to take;

“When I recently read the phrase, “I’m embarrassed to be sick,” it made my stomach clench and my breath catch. That’s exactly what I’ve been feeling….. I am ashamed of being sick….
…. If all the people not yet affected by chronic illness acknowledged all the undeserved pain in this world, they would be forced to confront their own vulnerability to the same forces. Instead, we all prefer to believe we have the power to prevent such disasters in our own lives. Sometimes I even catch myself thinking, “If you’re so smart, why did you let this happen to you?”

Those words were so revealing to my own heart. I have begun to see that I feel like a ‘failure’ for being sick. I feel like – ‘if I was only a bit stronger or wiser, made better choices, if only a bit more positive, if only I had more faith …. surely I could have overcome this sooner?’

Such thoughts often taunt me and drag me into a dark and negative pattern, which was particularly bad at Christmas, where I blame myself and feel responsible for still being ill.

It’s so humiliating to be so unwell and in pain long term.

Angelica highlights this so beautifully in another post called ‘The subtle arrogance of good health’. She writes about how many of us have fallen for the trap we set ourselves, because before we got ill we carried a form of arrogance at being healthy .

“My attitude was the typical thoughtless “arrogance of good health,” the attitude of those who can’t even imagine what happens when a body stops functioning properly. This arrogance knows only the kind of pain that heals, the kind of sickness that is cured.”

As I read those words I too knew it was talking about me. Before I got ill, I had carried the ‘arrogance of good health.’ I had believed that I was strong enough to shake it off when others couldn’t, because that was all I knew.

I was not the ‘type’ who would succumb to its chains. I was always so healthy and surely I could overcome anything thrown at me right? Surely my faith and positive mindset would win?

And then one day in January 2015 I fell off a step ladder and entered the world of chronic invisible illness and pain. I acquired a debilitating spinal CSF leak and brain injury that I haven’t YET overcome. I have been unwell for 20 months. Each and everyday I battle through chronic pain, physical & mental fatigue, a foggy brain, barriers to treatment and the challenges of not ‘being able’ to heal up, get well and get free.

And honestly,
I feel ashamed on so many levels!!

I feel ashamed that I have now become one of those people with ‘chronic pain’ and ‘chronic illness.’

I actually hate using the word ‘chronic’ at all! (Which is revealing of the sterotypes I accepted before).

I feel ashamed to tell you that I feel weaker than I ever imagined possible; physically, mentally and spiritually.

I feel ashamed that my ‘old’ positivity has taken a massive hit and most days I battle overwhelming feelings of despair at the thought of not getting better.

I feel ashamed that I broke down mentally at Christmas, exhausted and with nothing left for the fight, and seriously considered ending my life. I feel ashamed that the same ‘selfish’ thought has returned at times since then, although thankfully not to the same depth.

“In my view, suicide is not really a wish for life to end.’
What is it then?’
It is the only way a powerless person can find to make everybody else look away from his shame. The wish is not to die, but to hide.”– Orson Scott Card

I feel ashamed every time I have to update people on where I am at, and that I have to tell them I am still not well, it’s got worse and it is not yet over.

I feel ashamed when I can’t tell you that I have finished the fight, overcome, won and beaten this dreadful condition.

I feel ashamed that I cannot yet testify to the fact that I am now fully healed and whole, even though I believe in a loving creator God and Father who can do the impossible.

“O my God, I trust in You; Let me not be ashamed;” Psalms‬ ‭25:2‬ – The Bible

I feel ashamed telling doctors that I can’t seem to get better and hope that they will see past the ‘chronic pain’ patient with the unusual condition and know that it’s not ‘all in my head’ so that I can continue to get treatment.

I feel ashamed when the scans are clear and don’t show any evidence of a CSF leak, when the treatment I receive doesn’t ‘fix’ me or when my symptoms don’t always fit with the diagnosis.

Each day this drags on the shame gets worse.
Each day the shame is becoming almost as much of a burden as the illness itself.
Each day the shame is debilitating me and making me feel small.
Each day the shame is robbing me of my voice and tempting me to retreat from the world.

And it has to stop!

I HAVE TO BREAK FREE!shame-quote-copy

So today I am making the ‘unspeakable’ speakable; for myself and the multitudes who also travel the dark road of chronic illness and pain.

I am speaking out my shame so that it can no longer chain me up with its lies. I am choosing to acknowledge the space it has taken up in my thoughts; so that we can tear down its strongholds together.

Today I chose vulnerability; to speak the unspoken, so that you and I won’t have to suffer again in silence.

Today I choose to fight shame so that even though this condition taunts me daily, trying to persuade me I can never be free; it doesn’t have to define everything I am, do, and my relationships with those around me.

So today, whether you are battling chronic illness and pain or know someone who is; I pray that together we can tear down the ‘chronic pain’ stereotypes that perhaps we also once secretly adhered to ourselves, and no longer allow it’s shame to rule our and others lives.

“If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to whither.” – Brene Brown


What do you feel ashamed of? We all carry shame in some form. Please feel free to comment below – if we can speak it then perhaps together we can beat it!

I have now written a follow up post to this one titled ‘Grapping With The Shame Having A Rare Invisible Illness‘.

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.

Here is the link again to Dr Carroll’s video.

Learning To BE

Walk with me
Let’s forget the what-might-be
And slow to now.
– Speak Brother (Slow to Now)

These beautiful lyrics are a reminder that we sometimes have to slow down enough to live in THIS moment. To not let life rush us by. To make the most of every experience and to enjoy sharing those moments with others. Forgetting the ‘what-might-be’s’ and learning instead how to ‘slow to now’ so that we can be fully present;

Today
Now
In this moment.

The challenge of learning to BE, is just that. It’s about being present now, today; whatever today may bring. To not be defined by what we do or the titles we own.

Instead it’s about being:

ME, simply me, NOW.

This is probably one of the main lessons I have been learning over the last 18 months.

To be fully present TODAY, not distracted by fighting the limitations I currently face or the unknowns of tomorrow. But instead choosing to embrace THIS MOMENT and making the most of the opportunities I have HERE.

It’s not been easy. In fact, I have probably found it harder than any other point in my life. Because when you are dealing with difficult circumstances it is so easy to miss the wonder of the small things that still surround us. And yet, I have set out to learn and change for the better. To learn how to ‘let go’ of the unknowns, even when it’s so hard and when the future can seem so uncertain.

It’s a journey.
I am still learning.
I face the daily battles everyone else faces in their minds. (Particularly those of us fighting serious/ chronic illness or other turbulent circumstances).

And yet I hope that in sharing what I am still learning that we might learn together and in that way my journey might just help someone else.

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So how do we learn to BE?
It all sounds deep, but what does it really mean?

LETTING GO

Recently I have learnt a lot about the need to ‘let go’. To realise that there is so much I can’t control that I can only let go of. To choose not to allow worry and anxiety to take over and constantly dictate my mood and behaviour, overshadowing all I do.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of it’s own. – Matthew 6:34*

Worry and anxiety are usually caught up in our fears of the future and the ‘what if’s’. When we allow them to take over our thoughts they pull us to a place where we feel out of control and where the future feels beyond what we can cope with. That is what happened to me during the dark days at Christmas 2015 that I write about in ‘Breaking Through the Darkness.’

Letting go is often challenging, because you feel like you are letting go of everything you can’t control one minute only to find yourself taking it back the next. It actually takes learning new disciplines of the mind to learn to replace negative thoughts and learn how to redirect them.

It can often feel like an exhausting battle. But I do believe it is possible to find ways to replace negativity with positive thoughts and perspective.

On a practical level, deep breathing & relaxation can be a good outward form of letting go that can sometimes help us to deal with the inner things. The physical action of breathing in deeply then breathing out slowly can help us to let go of some of the tension and anxiety in our bodies.

BEING GRATEFUL AND THANKFUL

“It is not happiness that makes you grateful. It’s gratefulness that makes you happy.” David Steindl-Rast

These words are from David Steindl-Rast’s TED talk; ‘Want to be happy? Be grateful’. He talks about how we can learn to be grateful in EVERY given moment. It’s about a thankful perspective; CHOOSING TO SEE what we DO have instead of focusing on what we DON’T.

This is so important. Especially when we are dealing with difficulties in our lives. The storms in life have a tendency to pull us into them so that we can’t always see what we DO still have and the things that we CAN still be grateful for.

For me, gratefulness is often directed towards God. I daily try to thank Him for all the wonderful things in my life. We can learn to develop a daily habit of being thankful – practically we can write things down, pray about them or just choosing to focus our thoughts on them.

“I think that many times we let what should be extremely special to us—things we should be extremely grateful for—become too commonplace”. – Joyce Meyer

LEARNING TO SEE WHAT IS AROUND US

Learning to BE allows us to open our eyes to SEE more of the wonder of the world around us. To notice the beauty of nature and the joys of human relationship. We can become more aware of our surroundings. Taking time to look more deeply and discover new things.

I have walked a lot in our local area over the past few months and discovered so many new places I had never been before. Sometimes there can be beauty all around us but we miss it because of our busyness or the distractions in our mind. Some days we need to be intentional about looking to SEE what is ALREADY around us.

REDISCOVERING PURPOSE

I believe that we are all designed to have a purpose; a role in this world that only we can fulfil. Endeavours that help us to feel alive and make our mark on the world. However, ask anyone who has faced having to ‘give up’ what they love to do due to injury, illness or other circumstances and they will probably tell you how hard it’s been.

Our identity is so caught up in ‘what we DO’ that when we can no longer DO those things we can feel purposeless. It feels like our life is of little value anymore.

Scott Dannemiller writes:
“… we are defined by what we do. Our careers. What we produce. It’s the first question asked (of us)…. The implication is that if I am not busy doing something, I am somehow less than. Not worthy. Or at least worth less than those who are producing something.”

I have definitely grappled with this over the past 18 months and wrote about it in Is Busyness A Choice?.

WHO AM I WHEN I CAN’T DO ANYTHING?

It is actually these seasons that draw out the deepest questions about our identity. Who am I really? We have to search for new meaning and purpose because it is not always obvious.

I have had to learn that I am valuable without having to DO anything. I have a place in this world just being me. And whatever the limitations are, there are still so many things I CAN DO:

  • I can love others.
  • I can hold my family and speak words of love and encouragement to them.
  • I can use my words to encourage and help others going through hard times.
  • I can choose to be grateful for every blessing, big or small and communicate that to others.
  • I can keep enduring through the trial so that we can all learn through it and that those coming behind me can have an easier path.
  • I can broaden my mind by listening to other people’s thoughts and ideas.
  • I can go deeper in my faith by spending time listening to and speaking with God in the quietness and allowing His words to shape my heart, heal my hurts and reignite my hope and purpose.

FINDING PEACE AND REST AMIDST THE STORM

Is it really possible to learn how to find true rest and peace in any moment, even when those moments are stressful?

I believe it is. I write about it in this post.

We can learn to manage our emotions rather than allowing them to manage us. –Joyce Meyer

But I also believe that we have to learn new ways to deal with negative circumstances so that they don’t pull us into a cycle of negative thoughts.

The fact is physical rest is NOT always good for our minds. We DO need to rest and we certainly DO need quietness. But sometimes the silence can be deafening, especially when rest is enforced. This is because rest can cause our minds to go into overdrive. Our thoughts take over and if they are more biased towards the negative, silence can make them worse. (Think of times you couldn’t sleep because your thoughts were ‘so loud’).

So we need to have resources that help us to be still and restful and yet simultaneously focus on more positive things. Music and meditations are good. I also love listening to inspiring talks like TED talks, other people’s stories of trials they have faced, as well as teaching and inspirational messages that encourage my faith. These help me to focus my mind and gain a better perspective through prolonged rest.

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So I am again choosing to ‘learn to Be’. I am not yet fully recovered from my CSF leak journey. Whilst some of the symptoms linger I have no choice but to learn a new way of living in which I cannot DO everything I would like to do.

But instead of fighting this season and getting worn out as I did at Christmas, I have to ‘let it roll’ to a certain extent. Yes, there are many things I can do and can change that will help my situation and I need to celebrate those. But I also have to realise that there are also many I just cannot change myself. So instead of frustration consuming me, I have to learn, each and every day to ‘let go’ of the ‘what may be’s’ and ‘slow to now’ so that I can savour;

Every
Beautiful
Moment
That STILL exists HERE.


Please do comment below and share some of the things you have learned about ‘living in the moment.’ You never know, it might really help someone who is struggling.

You can listen to Speak Brother’s song ‘ Slow to Now’ here.

*Verse from the NIV translation of the Bible.  (The verse in image from Psalm 34:14 is from the NLT translation of the Bible)

To read more about my story of living with a chronic spinal CSF Leak click here.

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.

Breaking Through the Darkness

Hope deferred makes the heart sick, but a dream fulfilled is a tree of life. – A Proverb‬*

Have you ever reached the end of yourself?
REALLY reached the end of yourself?
When you are depleted at every level:
Physically,
Mentally,
Spiritually,
And psychologically?

When despair sets in and a darkness envelops you that feels so strong it literally attempts to strangle any life and hope out of you?

My world came crashing down in the week running up to and over Christmas this year and I fell apart in a way I never would have thought I could or would.

You see – I am strong!
I don’t give in easily!
I have a very real and deep faith in God!
I have a healthy thought life!
I don’t do being ‘weak’ so well!

I had held on all year.

Through an immensely difficult year for our family, following a serious and unusual spinal injury (a CSF Leak) that left me with major neurological problems.

I had finally received more treatment (a second epidural blood patch) for debilitating Low Pressure Headaches caused by a suspected CSF leak, and I had to muster up all the strength I had left to be positive, overcome fear and give recovery its best go. As I wrote about in When All that Remains is Faith, Hope & Love.

I had to be strong enough. Somehow I would be strong enough. I wasn’t going to give anything else away to this horrible condition.

I wouldn’t let it take more of my life.

The problem is that sometimes life takes us to places that are quite simply beyond us. Things don’t work out how we thought they would.

We give it everything we’ve got.

And then we find we have nothing left to give.

We humbly discover that we too are one of ‘those’ people we perhaps used to look down upon.

‘Those people’ who can’t cope. ‘Those weak people‘ that can’t keep going when life gets tough.

We discover….

THAT IS ALSO ME.

And it blasts everything we once thought about ourselves out the window.

‘We’ become ‘them’.
The one battling a chronic illness.
The one who ‘broke down’ mentally.
The one who felt like escaping life was perhaps better than living it like this.

And a new journey starts.

After weeks of waiting and battling for treatment – a second epidural blood patch – everything was poised in my mind.

THIS HAD TO WORK!
I HAD TO BE WELL AGAIN!

Being a positive, faith-filled person I filled my mind with that hope. Surely after all the discussions, waiting, battles and disappointments – it would work – IT HAD TO!! Our family couldn’t go through the trauma and chaos of any more upheaval because of this horrible and unusual injury.

I finally had my blood patch and all appeared to go well – although it certainly wasn’t an instant ‘fix it all.’ So I did what I always try to do – focus on the positive, believe, step out in faith and trust that as I regained my physical strength and conditioning that I would find complete health.

I did all that I could to push through various lingering, unpleasant symptoms. Stay positive and keep going. The problem was my body and mind was exhausted and as I pushed it more and more, it began to shut down. I survived for a time on shear willpower and adrenaline but 3 weeks after my blood patch I developed acute insomnia.

I would go to bed exhausted, sleep for 30 – 60 mins, then be awake all night …..every night…. for two weeks.

No ones body can survive like that whilst also battling a major neurological condition.

But I tried to keep on going, I thought ‘if I just keep going then I will get tired enough to sleep’. Then my conditioning will get back to normal.

I just wanted to be well for Christmas to leave this difficult year behind in 2015.

Things spiraled out of control physically and mentally – my symptoms seemed all over the place – before crashing in every way.

It was Christmas.

Usually a fun-filled family time of sharing gifts and eating together.

Christmas 2015 is a blur to me. I cried my way through it, in all honesty, exhausted, depleted in every way and not even wanting to live anymore – if living meant this.

I felt so very unwell and the relief that lying flat used to provide was not alway’s there. Which is why I couldn’t sleep. It was torture. My body and mind were utterly exhausted. I didn’t know what was going on.

I assumed that the blood patch had eventually failed and because of all the battles to get it I was not sure I could access another one.

I could no longer think straight.
I could no longer see a way forward.
I lost my perspective.

I naively and ridiculously found myself ‘wishing’ that what I had was terminal – because at least there would be an end in sight, if it was. At least there would be an escape from the inner and outer pain that I felt.

PAIN CONSUMED ME.

I felt stuck between an inner pain, grief, physical pain and such exhaustion that death seemed the only way out. Yet I knew to choose death would devastate those I would leave behind. Which added to my pain.

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Darkness enveloped me and pain became my reality.
Hope felt out of reach.
Faith attempted to hold on with its finger nails but was losing it’s battle.

My pride was shattered.
I was not so strong after all.
I couldn’t do it anymore.

Hope deferred makes the heart sick – A Proverb‬*

My heart was sick and I felt lost in a pit of despair that no one could lift me out of. Even my wonderful husband was struggling to reach me.

There comes a time when – however strong we are – we come face to face with the depth of our weakness.

I had never imagined I could be ‘that person’. That I could reach a place where thoughts of depression, despair and even suicide not only became real but became an obsession.

I just wanted it all to stop!!

I couldn’t do this anymore!!
I couldn’t take the chaos!!
I couldn’t take feeling so ill!!
I couldn’t face the battles of trying to convince doctors to help!!
(I actually thought me falling apart mentally would make my chances of getting help for my underlying physical condition even more problematic. I was scared that they would assume it was all ‘in my head.’).

And yet I first had to face the reality of where I was. I had been battling an injury that directly affected my brain – for a year. I had spent almost 6 months of that year in bed, lying flat almost 24/7 and the rest of the year at nothing like full capacity.

There comes a time when – however strong we are – we come face to face with the depth of our weakness.

But, I still felt like I had failed. I blamed myself.
One mistake with a ladder had cost our family so dearly.
One accident had robbed us of our future.
One moment had wrecked EVERYTHING!
I decided that I had then probably ruined my last chance of getting better by ‘blowing’ this blood patch by doing too much.

I had no ‘fight’ left in me so hopelessness washed in like a flood.

EVERYTHING BECAME DARK.

I couldn’t see past the darkness. Attempts to battle negative thoughts whilst being physically so depleted and unwell seemed fruitless.

I JUST WANTED TO ESCAPE.

I convinced myself that my family would be better off without the burden of such a debilitated, chronically-ill wife and mother.

The pain of thoughts of dying came face to face with the pain of thoughts of living.

I DESPAIRED OF LIFE ITSELF

“Courage isn’t having strength to go on – it’s going on when you don’t have strength.” -Napoleon Bonaparte

BUT……. IN THE MIDST OF THE DARKNESS LOVE BROKE THROUGH!

All was not lost.

Love reached out to me and helped me to hold on.
Grace was still there waiting to be rediscovered.
I had to open my eyes again to see that the light of love was still burning in the darkness.

Family and friends simply loved and supported me. They helped me to rediscover a better perspective. My 8 year old daughter used to come and sit on my bed and with all the passion she could muster she would tell me how much she loved me and that she wouldn’t want any other Mummy but me – even when I am so unwell.

A new journey began.
It was not easy.
It has been painful.
It has been hard.
It has been confusing.

I have wrestled with myself.
Wrestled with my identity.
Wrestled with my faith.
Wrestled with the darkness.
Wrestled with various neurological symptoms.
Wrestled with how to move forward.

It has been a very confusing time symptoms-wise. After the new year things began to improve. Some things were still like low pressure headaches. Some felt different. It was hard to know what was going on in my body, brain and mind. Doctors were not always sure either.

I had to discover the strength each day to put one foot in front of the other to just get through intact. To pull through the pieces of a broken life and somehow find hope again.

“Honesty & steadfast faith – especially in the darkness – forms a powerful & enriching message for everyone in pain….. Sincerity and humility are essential.”Samuel Chand

Darkness had enveloped me at a time when I felt like I couldn’t find God any more. Hope returned as I discovered He was there with me all the time.

I just couldn’t ‘perceive’ Him.

I had to rediscover God’s love and grace. Learn to ‘let go’ of the life I had lived and choose to trust and hope that I could recover and that there was something better ahead. I had to battle the fear and anxiety that tried to persuade me that I would never be free. I had to learn to get comfortable with stillness, quietness and to embrace true peace and rest on a deeper level.

I had to learn to perceive God’s voice in a new way and hold onto the truths spoken over me.

Breaking through the darkness quote copy

I have had to rediscover who I am in its simplest form and be OK with a more simple life for a time.

A new depth of humility helped me to see that I had sometimes  judged others ‘weakness’ because I didn’t understand them. I have now developed a deeper empathy and compassion for others facing challenges and struggles; especially those linked to chronic and mental illness.

I have had to discover a new kind of strength that is actually born out of weakness.

It’s been an immensely difficult journey and one that it has taken me a while to write about. For a long time I felt like I had lost my voice and had very little to say that could help others.

And yet.

I know that as we talk about our deepest weaknesses and vulnerabilities, others can connect with us and know that they are not alone. It then gives our own pain more purpose because our story can bring a ray of light in the midst of another’s darkness.

“We may impress people by our strengths; but we connect with them through our vulnerabilities.” – Nicky Gumbel

It can be invaluable to know that someone else is also struggling and that your journey can help them too. We can then navigate the stormy seasons in our lives TOGETHER and some how help one another to weather the storm.

Albeit wounded.
Yet stronger.
With a new perspective.
More appreciation of life.
And a deeper empathy for others.

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.” – Haruki Murakami



Please do feel free to comment below. To read more about my initial injury and journey with a CSF leak/ Low pressure headaches you can see these posts.

*Proverbs 13:12 from The Bible

UPDATE March 2018: It is now looking likely that after epidural blood patches I may well have experienced some rebound high pressure symptoms. This is a very confusing condition, that can be a severe complication of epidural blood patching/ CSF leak treatment. Here is my more in depth post about experiencing this after my 4th EBP in September 2017.


 

To read more about my story of living with a chronic spinal CSF Leak click here.

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.

A fantastic informative video that you can refer to about spinal CSF Leaks, their symptoms and treatments is The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak? by Professor Ian Carroll at Stamford University Hospital.

Never, Never, Never Give Up! 

“Never, never, never give up.” – Winston Churchill

“The brave aren’t brave because they don’t feel fear. They’re brave because they pushed through it.” – Carey Nieuwhof

There are seasons in our lives where we will face a lot of discouragement and disappointments. Sometimes these knock on our door one by one. Other times we seem to face a barrage of them; where one thing after another seems to go wrong.

It feels like there are challenges and hurdles at every level. 

Each one has to be faced and each time you have to keep bringing yourself back, getting over the new disappointment and find the strength to move forward.

There are moments when despair knocks at your door. Pleading with you to let it in and yet you know if you let it in, you will also let in all the other feelings and thoughts that accompany it. Once they get a hold of you, it is hard to break free because those dark thoughts will pull you into horrible places.

It is not easy some days. You have to find the strength for each new day, each new battle, each new decision.

Sometimes all you can say (or shout) to yourself is:

“I WILL NOT QUIT! I WILL KEEP ON GOING – REGARDLESS OF HOW DIFFICULT THIS IS!”

Until you can again break through to a place of hope. A place where you can see light for your future. A place where you decide you will not let what is happening around you and to you destroy you. A place where you can gain a better perspective and will not let the bad news win!

It takes great courage and strength to keep on keeping on when the way forward is not clear. 

We had some disappointing news from the hospital this week. Following my relapse a month ago of CSF leak/ post-concussion symptoms, I was offered a second blind epidural blood patch as treatment. (I had one in March that got me back to about 70-80% normal for 5 months).

Two weeks ago I went to hospital to have this procedure, but when at last the anaesthetist was ready to call me to theatre, the day ward I was on realised that the ward would shut before I had taken the full recovery time.

So it was cancelled. 

I cried when they told me (thankfully I was wearing sunglasses due to photophobia). So I had to let my husband talk (because I couldn’t get my words out). He remains the most brilliant advocate through all this. Calm and understanding, yet strong and willing to fight where necessary.

When you have waited ten days for a procedure to help you get better, then you go into hospital, wait all day for it to happen, told they are ready for you in theatre, to then find it can’t happen after all – is really very hard. 

But we were assured it would get rearranged. So we pulled ourselves together and chose to keep waiting.

After two more weeks of waiting for another appointment (and after daily phone calls to chase it up), it turned out that the anaesthetists have changed their minds and have ALL refused to do the blood patch and instead I have been referred to the chronic pain clinic to manage symptoms. (A blood patch is an internationally renouned treatment to deal with the cause and symptoms of CSF leaks. And the treatment requested by my Neurology consultant. The problem is a lack of understanding about how they work and the diagnosis means Doctors don’t always want to take the risk with them). 

After already waiting for four weeks for a blood patch, to be told I won’t get it is unbelievably disappointing.

It feels like another ‘blow’ in a very challenging journey. 

It’s left us in a very difficult position in which we need a lot of wisdom to know the right course of action to move forward with.

I currently still need to lie down flat all day to deal with symptoms. 

Despair is knocking at the door of our lives coaxing us to allow it in.

But we WONT let it! 

It won’t steal my inner peace. 
It won’t
steal my inner strength. 
I will
keep on keeping on – Regardless! 

It’s hard but I won’t let it destroy my life. At every level, I am choosing hope. I won’t settle for fear, doubt, worry, anger, bitterness and blame.

As a Mum I have a responsibility to demonstrate to my kids how to face hard times and endure through them; yes – somewhat broken, but also stronger and wiser.

As church leaders Matt and I together have a responsibility to show that we can face what life throws at us and still remain full of faith and strength.

It doesn’t mean we find it easy. It certainly doesn’t mean we don’t feel weak. 

  • We get angry at the process. 
  • We daily face the frustrations of managing life with me in bed all day. 
  • It’s painful, it’s hard, we often don’t know what to do. 
  • There are tears, there is exhaustion.

But we have already decided:
WE WILL NEVER, NEVER, NEVER, GIVE UP! 

“Leaders are teaching others how to handle pain at the exact moment they are learning these lessons themselves. The pain is felt and the lessons are taught in real time.” – Samuel Chand

Despair, anger, frustration, hurt and worry come against us. Telling us their pitiful story of how terrible our life is and how hard this is for us.

But we have learnt and will continue to learn how to stop these thoughts as quickly as we can.

It’s not easy, but it is possible. 

“….let God transform you into a new person by changing the way you think.” -‭Romans‬ ‭12:2‬ (The Bible)

We will not allow our perspective to be dragged down to the smallness of our current circumstances. We choose to look beyond this. To find purpose within the pain. To remember what we do have to be thankful for.

And when we don’t have the strength to fight, we know that God will carry us. We know that we have people around us standing and fighting with us and for us.

We are not alone and we will ENDURE! 

Endure: To carry on through, despite hardships; (The Free Dictionary).

We endure each day by facing and finding the strength for today. Not getting bogged down by what may happen tomorrow. If we look too far into the future it can overwhelm us.

“Worrying is carrying tomorrow’s load with today’s strength- carrying two days at once. It is moving into tomorrow ahead of time. Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength.” -Mother Teresa

This is the hardest long term battle I have faced in my life. 

It came out of nowhere and suddenly tried to take control of my life. My story of this year will always be a part of me but I will not allow it to consume everything in me as well.

I am not a diagnosis. I am Becky Hill who is having a challenging year fighting a complex diagnosis. 

I WILL come through this. However long it takes. I WILL get better.

And in the meantime I intend to travel through it as well as I can. Make the most of every opportunity. Do what I can do and not despise what I can’t.

Learn
Grow
Inspire
Lead
Live
Teach


Regardless! 

My life does not only consist of what happens around me. We cannot always change what happens around us or to our bodies. But what has happened won’t take me inside. In my heart, my spirit, my thoughts. 

So even when my body is weak (weaker than I have ever known). Even when physically my strength is limited.

My spirit can soar. My heart can sing. I will do what I can to still build myself up, stay encouraged and inspire others in the process.

I have to fight for the right perspective on foggy days.

But I will overcome. 

It will change me.
But good will come from this.

I will not allow it to take me down! 

“Endurance is not just the ability to bear a hard thing, but to turn it into glory” – Philip Yancey

Can good things come out of your suffering? What could you do to find purpose amidst pain?


Thankfully after finishing this post we got some better news from the hospital. It’s by no means clear cut but there is a bit of a way forward now. We can always hold onto hope and faith. 

To read more about my ongoing story of living with a chronic spinal CSF Leak click here.

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.