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

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Embracing Simplicity

“Out of clutter, find simplicity. From discord, find harmony. In the middle of difficulty lies opportunity.” Albert Einstein

Over the past couple of years I have often felt like my life has been aggressively and almost completely stripped back. The core of my life is still much the same as it has always been. Yet I often feel like a tree that has been radically pruned. With so many of the branches of my identity and the things that I used to do being brutally chopped off and left to die. Leaving something quite exposed and bare, with many stubs where branches used to be.

When you spend most of your day lying down, and the time you can be upright is exceedingly limited by various intense and horrible neurological symptoms, you find that your life becomes extremely restricted. Everything becomes immensely simplified in many ways (even though there are also many complexities to contend with too). Life mainly consists of things you can do lying flat, or the few limited things you can do whilst upright – although still feeling very ill.

It’s been a very challenging journey to embrace a more simplistic life. 

It doesn’t help that we live in a society that often glorifies busyness!

Our Western society is full of people who often seem to wear badges of importance – based, in part, on how busy their life is. Most people are forever expressing how immensely busy they are. This makes it extra hard for those of us who are ill long term, because we have to instead embrace a new identity that can no longer be defined by our busyness. Suddenly we can feel somewhat detached from normal society – a bit of a ‘nobody’.

Everyone around us seems to be carrying on with their ‘normal lives’ whilst we feel like ours is stuck. 

We live in a never ending state of limbo, not knowing if or when it will change.


In my 2015 post Is Busyness a Choice? I spoke about an article by Scott Dannemiller called ‘Busy is a Sickness’. In it he wrote:

“… 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 really do believe that this is a massive problem for those of us who face long term debilitation. 

We not only have to take a very humbling journey of coming to terms with it ourselves; we will also often have to face others’ questions, attitudes, and sometimes prejudice – as well as naivety and ignorance – towards our disability and inability to do what we once could do.

We find that we begin to lose much of our identity, because it feels like we are not doing much anymore. Rather than being an active member of society – we feel pushed to the side lines, often misunderstood and sometimes even forgotten about.

We are suddenly not so sure who we really are any more and our condition begins to knock our confidence – until we perhaps no longer feel like we ‘fit in’ with normal society like we used to.

Over time, we realise that we have to go through a deep and painful process of grieving and letting go of who we once were. And much of what defined us. 

So that instead we can truly embrace who we are now – in this season. We actually have very little choice in the matter – if we cannot change our current circumstances ourselves then we have no option but to accept it and find a way to live the best life we can amidst all the restrictions.

I learnt over time that I had to stop torturing myself with what I could be doing IF I was well. I had to give up imagining how different life could be if I was healthy. I had to refuse to compare myself to what ‘normal’ people were doing and instead embrace the quieter and more simple life, of mainly being at home, often lying down. I had to see the opportunities that could be found here instead.

We must learn to establish a daily discipline of choosing to see the beauty and wonder in simplicity. To somehow embrace a simpler life. The more I go on that journey – the more I see that there are still so many things to be thankful for and enjoy here.

Despite the restriction, debilitation and pain. 

Really it is all a matter of perspective. As many things in life are. 

Attitude is everything! 

Since I have battled this chronic illness I have realised more than ever that we are often fed a lie by society and the media that our life should always be lovely, fun, immensely satisfying and great. Everything should be as perfect as it can be – and it will be – IF you have enough money, health, great jobs, nice homes, loving families, expensive holidays and up to date gadgets etc. Then we will all be perpetually happy.

BUT it’s just not true!

Hence why there are so many miserable, struggling people who actually have all those things in abundance. Sometimes it’s the people I know who have the most of all those things who are the least happy. Mainly because that mindset draws you into a never ending cycle of desiring more and more – which only leaves you increasingly discontented in the end. Because there is always someone around who seems to have a better lot in life and appears to be happier than you.


I have learnt so much through my two-year journey about trying to be more grateful for the small, everyday things, whilst learning to let go of ‘the dream’ of ‘normal living.’ In doing that (which is a very raw and painful grieving process) I learnt I could find so much joy and wonder here too. And if I can find it here, then I will be so much happier – as well as more content and thankful – when I do hopefully get well. If I can learn contentment without having all the things the media tells me I need – then I will be happier for a life time regardless of whether I stay sick or get well.

It’s a lesson I have also had to embrace with regards how I parent my children. It truly is heartbreaking when sickness robs you of being the parent you always desired and planned to be. It’s a very difficult thing to face and unfortunately you can find yourself envying other healthy normal parents, which doesn’t help.

When I experienced a complete physical and mental breakdown at the end of 2015, it was the grief of letting go of being the Mum I was and wanted to be that caused some of the deepest inner pain. I am so very thankful that my girls are now that bit older and slightly more independent, which makes things so much easier for us as a family. And yet currently I can’t go out with them or do most of the fun or even necessary things we used to do.

I really am currently stuck at home, mainly lying flat, nearly 24/7. 

However, I have also learnt that sometimes my kids can learn better life lessons from us facing this as a family than they could if life was just ‘normal’ and great. I realised that if I can’t find a way to truly live here, in the midst of the disappointments, then how can I help them to know how to face their own challenges and disappointments in life? They will certainly come at some point. If as a parent I can’t come through the crisis, then what does that teach them? But if my children can learn how to endure life trials – from me and my husband – then they will hopefully be much more stable and wholehearted adults.

Adults who can weather the storms of life and stick out long term relationships much better. Meaning they may well be happier and more fulfilled adults because of this. It will also hopefully help them to grow in compassion for others, so that they learn not to ignore or avoid another’s pain, but instead look at how they can share it and help support another in and through it.

Compassion is a stunningly beautiful quality to have. 

As my body is so restricted on the outside, I actually often feel the energy of what’s within intensify. It’s like there is this ball inside me with a mixture of so many different emotions. I know I have to redirect the ones that want to pull me into a dark place and allow the positive ones to become increasingly dominant. So I am trying to focus my own pain on connecting and helping others in theirs.

I have decided that I must find a way to live like this – so that I can help another walk through their own deep darkness of facing this condition or similar debilitation.

It’s allowing the love, grace and compassion that is within me to break out to help someone else. It’s channelling my hurt into feeling another’s pain with them so that I can then say, “How can I help you today? What advice can I give you from the lessons I have – sometimes painfully – learnt over the years.” 

These are some of the simple things in life that I can still embrace and still do. And it’s when I am focused on things such as these that I am drawn less into only seeing the negatives of my current predicament. It is then that I often find the beauty that is found in simplicity. And it reminds me that even if my body remains debilitated, on the inside I can still feel fully alive.

So let me embrace the wonders hidden in the simplicity of my current circumstances. Because if I can do that – in this place – I will hopefully discover a deeper contentment and satisfaction that may well last a lifetime as well. So that IF one day I can leave this whole immensely difficult season behind for good, I will at least have learnt more lessons and disciplines through it that will become the firm foundations of my life tomorrow.

So that although I have had to experience a major pruning and cutting back that has left me looking exposed and bare today, perhaps in the end it will simply leave room for growth that will allow new shoots to form tomorrow. Producing a stronger tree in the future that is happier, healthier and bears good fruit in the right season.

None of us know what tomorrow will bring. 

But if we can all learn and grow enough today, so that we can somehow find the inner strength to face whatever might be thrown at us tomorrow, we will be able to take our stand in the crisis and allow this cry to rise up from within us to say:

 “However bad this gets and however long it goes on for… I am determined to find the best life that can be lived here – in all its gloriously redefined simplicity.”


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 Humility That Is Found In Suffering 

“There is no growth without change, no change without loss and no loss without pain.”Samuel Chand

One of the most painful, yet ultimately liberating, lessons I have learnt since being ill long term, is the potential suffering has it has to bring far more humility and compassion for others into our lives. 

Anyone who has suffered from any debilitating chronic illness, a life changing disease or injury, or has gone through a season of suffering due to the loss of a family member, or other traumatic events, will tell you that it truly humbled them in a way normal life never can.

When things go wrong in our lives we crave to have normality back – as if it’s the most precious gift of all. We fondly remember how much easier life was, even on the ‘tough normal days,’ when we had our health or loved one and life was going ok.

But when you have faced some kind of personal tragedy, or some kind of deep suffering barges its way into your life, you soon learn how hard it is to lose what you perhaps took for granted before hand. You discover how much your confidence and coping mechanisms get crushed.

It is often only in suffering that we truly learn who we really are. We become more aware than ever of our many personal frailties and weaknesses. 

We wonder if we truly have the strength to make it through. 

It’s usually only when we see what ‘rock bottom’ truly looks like for ourselves, in all it’s darkness, pain and desolation, that we begin to understand how ‘rock bottom’ looks and feels for others. 


When you meet people who have faced suffering like you, or even differently, but in a similar light to you, there is a knowing look shared between your eyes when you meet, or a deeper message running through the words when you talk. There is a heart connection that silently says, ‘Yes, I know…. life is so very tough sometimes…. I know what it’s like to be completely broken…. and I know what it’s like when you have no idea about what you are going to do make it through.’

“The beauty of humanity is that suffering can, if we let it, unite and draw us together in a way that nothing else can. It strips us of our titles and crafted exteriors and touches the heart. It has the power to break through masks, if we let it, because it touches who we really are.

And we all need that:
 Sometimes our hearts need to be exposed. 
Our weaknesses need to be seen. 

Because it is then we realise that we are ALL just fragile humans. It is then we realise that we are ALL more similar than maybe we thought. It is then we know that we ALL face challenges and we ALL feel pain.”

I penned those words in one of the first blog posts that I crafted a year after we lost my Mum. It was a time of processing my thoughts and emotions, whilst trying to connect with others. Thankfully, I had already taken the time to walk myself through that difficult, but rewarding process of increased self-understanding, a few days before I embarked on my next, even bigger, encounter with pain and life changing suffering. I fell from a ladder and sustained a debilitating spinal CSF Leak that I still have today over two and a half years later.

It has been through this more recent journey, that has included walking through a different type of grief, that has taken me so much deeper into those same truths I wrote about then. Suffering does touch our hearts profoundly, it reaches to the core of our being. It strips back all the trappings of everyday life and reveals to us the things that really matter. Masks and pretence are thrown away, as we are pulled out of our comfort zones and realise that we cannot do this alone. Those of us who once considered ourselves rather strong and able, suddenly find that we are, in reality, far weaker than we ever imagined.

….. And it is truly humbling.

But that is why there are elements of suffering that we can also embrace, because often it makes us kinder and more compassionate people in the end. It stops us being so judgmental of others – it can actually level the playing field of life – as we truly see that we are ‘ALL just fragile humans.’ 

“In his delightful little book ‘Off the Sauce’, Lewis Meyer writes: If one could use only one word to describe the feeling of an AA (Alcoholics Anonymous) meeting, it would be love. Love is the only word I know that encompasses friendship, understanding, sympathy, empathy, kindness, honesty, pride, and humility. The kind of love I mean is the kind Jesus had in mind when he said, “Love one another.” Shoes might be shed, attention might be diverted, but there is a closeness between AAs, a closeness you seldom find anywhere. It is the only place I know where status means nothing. Nobody fools anybody else. Everyone is here because he or she made a slobbering mess of his or her life and is trying to put the pieces back together again. First things are first here…. I have attended thousands of church meetings, lodge meetings, brotherhood meetings—yet I have never found the kind of love I find at AA. For one small hour the high and mighty descend and the lowly rise. The leveling that results is what people mean when they use the word brotherhood.”

I read these words recently in a wonderful book by Brennan Manning called Abba’s Child, The Cry Of The Heart For Intimate Belonging.’ They are such challenging words to us all. A profound reminder that it is only in the deeply humbling experience of coming to the end of ourselves, and truly realising how weak, broken, messed up, selfish, dysfunctional and ‘not good enough’ we ALL are, in our own ways, and being real and open about it to others. That it brings the ‘levelling’ that is desperately needed to show the deepest love, grace and humility to others too.

When you know the dark reality of ‘reaching the end of yourself’ you do find that ‘we are all more similar than we think.’ We are ALL humans who have weaknesses and insecurities, which become increasingly obvious when we are faced with an extremely difficult season of suffering.

Suffering exposes our many weaknesses, it makes us feel awkward and uncomfortable and can fill us with shame when we shockingly find that we lacked the ability to cope as we thought we should. But sometimes we must simply let it do its work in us. To embrace, rather than run from what it discovers, then face it, be real about it and look at what we can learn and how we can change. This is always the start of a deeper transformation that will make us kinder, more accepting and loving people.

“Not everything that is faced can be changed. But nothing can be changed until it is faced.”James Baldwin

Do you not love the idea of a world where ‘status means nothing’ and nobody is trying to ‘fool anyone’ anymore with their masks, carefully crafted exteriors and pretence? When we are aware, honest and humble about our weaknesses as well as strengths, so that we can be kind and compassionate about an other’s as well.

“If you think you are too important to help someone, you are only fooling yourself. You are not that important.” – The Bible*

Suffering helps us to see that maybe we were not quite as strong, good or important as we maybe once thought. It helps us to acknowledge and see our weaknesses – if we embrace it properly. Which will, in turn, hopefully take us on a new journey of self awareness. We then find that we have to accept the reality of where we are. Even with its many difficult and uncomfortable thoughts and feelings, as well as its multitude of insecurities and unknowns.

So that even in the midst of it we begin to see that even when we have hit rock bottom, it is not always such a bad thing to experience. Because then I will taste a bit more of that unique humility that is found there, I will know what it’s like to battle darkness face on. I might walk with a new limp where suffering took me down for a while. But ultimately I managed to get up and carry on regardless, even when the scars and wounds are still there.

It’s in the raw vulnerability of those real moments, when we can reach out our hand to another, and our eyes and words will meet in that place of unspoken heart to heart understanding. And it’s there we will find we can walk together through our storms; as equally broken, yet ironically stronger, kinder and wiser humans.

Until one day we find how much it has changed us. 

And that is the moment we truly begin to see the wonder, humility and connection that can come from suffering…

… but only IF…

We choose to let it do it’s mysterious work deep within us, by finding the resolve keep seeing the beauty that still resides in its very painful midst.

“The beauty of humanity is that suffering can, if we let it, unite and draw us together in a way that nothing else can. It strips us of our titles and crafted exteriors and touches the heart.”


*Bible Verse from Galatians 6:3 NIV

For links to posts mentioned above and quoted: ‘A Year Ago Today: A Journey Through Grief And What I Have Learnt.’  and more about my Spinal CSF Leak: Living with A Spinal CSF Leak

Here is a short video that raises awareness of Spinal Fluid Leaks.

What Is Within Us Is Who We really are. 

Over the past two years whilst my body has not been working properly, I have had to learn that what’s inside me, who I am within, is far more important than what is seen on the outside. 

On the outside my body is currently broken and debilitated by my spinal fluid leak. But I am increasingly learning that it’s what is on the inside that truly counts. 

So even though I am currently struggling to change the limitations of my physical body, I know I can still develop the person on the inside of me, whatever is happening on the outside.

This means focusing on feeding what is inside of me with good thoughts, words, inspiration and ideas. Having the wisdom to know how to cultivate the good parts, then allowing the positives (as well as the stark reality of the difficulties) to break out through my writing and in my communication with others.

That is why words are so precious to me. 

That is why writing is a wonderful gift, because it allows me to try to express the inexpressible. It allows something of what is on the inside to break out to speak and connect with others.

Last night, I was trying to describe to my husband Matt how, whilst my body is stuck lying flat nearly all day, it feels like what is deep inside of me keeps intensifying. Even the pain and struggle of this season fuels this ball of passion inside of me, a force that I want to be characterised mostly by love, compassion and grace, and yet still have the rawness and reality that comes with our natural human weakness. And I have certainly become more aware than ever of my weaknesses over the past two years.

I believe suffering brings a whole host of deep feelings inside of us. Some are good; it can develop more humility, more understanding of others pain, more compassion for those hurting, more personal resilience and strength. But on the not so good side; suffering can also draw us inside ourselves, we can easily become self absorbed and left sinking into a pit of self pity and despair that becomes extremely hard to climb out of.

All extremes of feeling and thought come at me daily. Some days and sometimes it takes all my might to redirect the negatives. Sometimes it feels almost impossible to stop them overcoming me. I can have many moments of tears and emotional/ mental exhaustion.

Yet I know I have to fiercely guard my heart and mind and protect what is inside of me. Every day I have to choose carefully what to fill my mind with. Every day I have to be ruthless in taking control of my thoughts. Every day I must make myself see the beauty and wonder that is still always around us.

“Guard your heart above all else, for it determines the course of your life.” – ‭‭A Proverb‬*

I must keep choosing to see outside of myself and look at how I can contribute positively to the world around me. I must stir up the wonder of what is inside of me, until it breaks out in and through my words and actions in the form of love, grace, compassion and fighting with, and for justice for, other people.

For me what is inside is intrinsically linked to my spiritual faith. You cannot separate the two. That is what inspires my many words!

It is through spiritually inspired words, thoughts and ideas that I feed the good parts of what is within. It is only in and through my love for God and other people that I personally can and will find a way to live like this, for as long as I have to. It is God’s Spirit that lives on the inside of me, that is at the heart of the ball of passion and love that inspires and creates the words that I speak and share.

It is God who leads me through this dry and desolate land and helps me to change the way that I think. Through His words, truth and other people’s wisdom, kindness and love, I can cultivate what is on the inside of me so that the good stuff can grow.


Some people must wonder how I can still love and trust in a loving creator God, when I am stuck with this cruel debilitating physical condition. But for me, I just don’t know how to live without him. I have wrestled through many questions and thought through the whys, as I wrote about in Why Me? The Soul Destroying Question.  And yet sometimes we have to just let go of the whys and instead focus on what we do know.

I know more than ever that God is alive within me and that he fills me with his peace and love. Even while there is seeming desolation on the outside….

Deep within me there is a whole other world. 

I want to discover more of the incredible beauty of that deep potential within me. A place that has been made raw and real by suffering and pain. And yet a place that is made beautiful and tender by unconditional love. So that I can dive even deeper inside me to find what can touch another deeply inside of them as well.

I don’t want to settle for just surface connection with others. Instead, I want to reach out and connect with another’s heart. I want to honestly meet them there, in their deep reality of both joy and pain.

So I need to do all that I can to keep being filled with inspiration. One way I do this is to read various ‘devotions/ inspirations’ on my You Version Bible app each day. Those words of inspiration by various authors, when added to the truth and beauty of Biblical words, feed my spirit and soul and re-balance my thoughts and emotions.

Some days when I open my Bible app to read God’s words, I am like someone who has not eaten for a while, desperate for some sustenance, craving more deep satisfaction.

I can often wake up in the morning and suddenly remember the reality of my current life and discouragement and despair can begin to try and seep into my mind and heart. It’s then more than ever that I know I need some deep inspiration from God to hang my perspective on again, as I start my day.

“But if I say I’ll never mention the Lord or speak in his name, his word burns in my heart like a fire. It’s like a fire in my bones! I am worn out trying to hold it in! I can’t do it!” – ‭‭Jeremiah‬ ‭20:9‬, The Bible

When I take the time to invest in filling myself with good words, they increasingly burn within me. They are like fuel that keeps the inside aglow. It’s only if I put the right inspiration within me that the right inspiration will come out of me.

I really do love and value words so much.

  • Because words are what connect us all together.
  • Words are what communicate from what is within us.
  • Words are what encourage and inspire us in the hard times.

So I have decided that whilst the never ending battles continue on a physical level, I want what is on the inside of me to tell a very different story. An adventure that probably won’t be seen much from the outside. But if you listen carefully you will still hear something about it. As I use words to attempt to describe to you what is truly going on deep within my soul.

 “You cannot kindle a fire in any other heart until it is burning within your own.” Eleanor Doan


*Proverbs ‭4:23‬ ‭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.

Facing Disappointment After Disappointment But Pressing On Regardless…

“True hope is honest. It allows a person to believe that even when she falls down and the worst has happened, still she has not reached the end of the road. She can stand up and continue.” – Philip Yancey

I’ve now been on the roller coaster of chronic illness and pain (with a spinal CSF Leak) for nearly 2 1/2 years. During that time I have been almost fully bed bound for months at a time, then for many other months I have been able to live a part normal life where I can be upright enough hours to get the basics done at least.

I have not had one day feeling fully well for those 2 1/2 years.

It’s been tough!

I can hardly remember what it feels like to feel healthy or live normally. To be able to make plans trusting I can go through with them. To not be on this daily treadmill of dealing with the multitude of restrictions and limitations. Whilst simultaneously having to be extremely patient, letting go of what I can’t change and trying my best to stay thankful for all the good parts of life too.

Following about a year of slightly more manageable symptoms. Last week I tripped and fell flat onto the pavement, and within 24 hours of that fall it became obvious that the very minor accident had caused a complete relapse of my CSF Leak symptoms, leaving me again stuck in bed/ lying fully flat for over 22 hours a day.

And it’s honestly so disappointing.
Going backwards again instead of forwards.
To again be struck by the full force of this cruel condition.

The roller coaster is exhausting. It can take months and months to see any improvement in this condition then in one moment, in one misplaced step….

BOOM!

I am back to where I started.

And it is honestly wearing me out!

These are the words I wrote a day after the new fall, as it became clear that I was facing another big symptom relapse….

Every time I face a setback my heart sinks.
Every time I get worse again, I remember how good I had it last week when I was slightly better.
Every time I want to give up, I know I can’t, I have no choice but to keep on going.
Every time I want to sob and sob, to let it all out, but soon realise I shouldn’t because it will only make my symptoms worse.
Every time I picture the life I can’t live and have to let it go again.
Every time I hope for better days but worse days come instead.
Every time it tortures my motherhood that I can’t be the Mum I want to be.
Every time I can’t help my husband look after our home or do everything I want to for and with my children.
Every time my body rebels and forces me to have get flat again before it completely shuts down.

Every day I have to pick myself up, dust myself down and choose to keep on fighting another day.

Sometimes I get weary.
Sometimes it feels like I have nothing left to give.
Sometimes I wonder if I am really strong enough.

But what else can I do but get up and keep on going? Hoping and believing that one day things will again be better than they are now. And that I will one day be able to access the medical care I need to help me get better.

That is what I wrote last weekend as I faced the consequences and hard reality of that fall. They were the feelings and thoughts that bombarded me last week. They were the things I had to face but then let go of.

It’s really not easy to be back here again!

“Pain is no evil, unless it conquers us.” – Charles Kingsley

And yet something is different this time. Those thoughts and feelings didn’t plague me for as long. I have realised that within me I have reached a place of deeper freedom. The journey I have been on for over 2 years has taught me so much and made me so much stronger, whilst simultaneously being more aware of my weakness.

As the condition has beaten me down yet again, I have felt a deeper resilience rise up from the inside – despite it all. A deeper peace to keep on letting go.

I almost feel a shout within me of ‘come on then, bring it on!’
A battle cry that I will not give in, I will still keep living here.
An act of throwing off the burdens and obstacles coming against me.
A determination to make the best of things that I can.

So that is what I am choosing to do. However long this cruel condition keeps knocking me flat. However much it tries to mould my life around its limited perspective. However much it tries to feed me with despair and taunt me with the life I could be living.
However much it tries to bind me up in it’s web of disability, restrictions and chronic pain.

I have to decide that I will not let it rob me of who I really am and who I am really meant to be.

If being Becky Hill means working with this rather than wearing myself out trying to constantly fight it, then I must work with it for as long as I have to. Looking for the opportunities, rather than focusing on the limitations, seeing the beauty still around me, even in those moments it feels unbelievably hard. Because….

  • if I cannot live here, then how can I ever ask anyone else to live through their own very challenging season either?
  • if I cannot find a life amidst all the restrictions, then how can I teach my children to do the same?
  • if I give up the fight then how can I encourage and draw out resilience in others?
  • if I cannot find joy in the midst of suffering then does my spirituality mean anything to me?
  • if I cannot love deeply and see outside of my self, even where there is pain, have I even found true love at all?

So seeing as I have relapsed again as we head into summer, we made our own declaration to this debilitating condition. We brought a garden sun bed that goes completely flat so that if I have to spend my days lying flat, I can do that outside as well. Amidst the garden, the sun, the natural world, the cool breeze and the birds singing their wonderful distinctive songs.

FullSizeRender (16)

So I will play card games with my family outside whilst lying flat, I will keep sharing my heart with my husband, I will ask my kids all about their days. I will continue to write, I will read books that inspire me, I will try to connect with and encourage others with my words. I will listen, learn, grow and change. I will enjoy the presence of God and allow Him to touch and change me from deep in my soul.

This condition has and will change me, that is inevitable. But I am determined for it to be only for the better. Because I will not let my spinal CSF leak completely devastate mine and my families life. I will not let negativity overshadow our love for one another. I will not let it steal my peace, love and joy. I will not let it take me down and pull me into the never ending pit of despair.

Instead I will rise up from deep within and find a way to live with all the restrictions, to enjoy the simplicity of life, to appreciate everything I do have and can do, and love everyone I can with all my heart.

“Pain is inevitable, but misery is optional!” – Andre Olivier

So it’s true: last week I tripped, fell and relapsed yet again. But last week I also chose a better way forward. I cried, I faced the pain and loss, I recognised the challenges ahead. I am not in denial, I am more aware than ever about how difficult this will be. There is never a simple way forward in this relentless CSF Leak game.

But after falling I had to get up again. I had to choose to live my life with even more determination and resolve. I had to make a decision…. to not give this condition permission to destroy my life.

Instead I must use it to build more resilience, increase my compassion and help me feel another’s pain. Use it to embrace time to write, read, learn and inspire. To declare that we can still have a life even when so much is stolen. We can still have purpose even when we are mainly stuck in bed.

So let me learn to endure this trial for as long as I have to. Let me find a way to tell another …. ‘yes this really is so so tough – but it can be done, we can find ways to live life like this.’ So let me choose to let go of the life I thought I should live and embrace the life I am currently living and give all I’ve got to truly living here.

Let my heart be moved and my mind be transformed until – rather than complaining – I can sing a new song of thankfulness and joy. Rather than focusing on all that’s lost, I will see all that can be gained. Rather than pulling others into my despair with me, I can choose to love and encourage others even in the midst of my and their pain.

It’s then that purpose can still be found in suffering. It might not be the purpose we envisioned for our life, or the path we would have chosen for ourselves or our family. But this is the life we currently have. So with a deeper resolve and a new patient resilience I will declare that I am finding a way to do this. We, as a family are finding a way to do this.

For as long as this journey takes.

I may not be able to do much. But I still have my work-in-progress story that is being written. It’s taken me on a tangent I never envisioned or imagined. But it’s still my story. Although I cannot control every part of my story I am the greatest contributor to the style in which it is being written, formed and shared.

So let me write the best story I can. The real story. A story of strength in weakness and love conquering all. So I can keep encouraging you to keep writing your best story too.

“Our story is what we have to offer the world…. I wish I had a different story than the one I just lived through, but I am so grateful for the story that has made me who I am today. Even the pain. Even the wounds. The sadness was real. The brokenness deep. The scars mine. It’s my story. It’s who I am. It’s how I’m becoming.” – Erwin McManus (The Artisan Soul).

This is my story!

It’s my story of who I am. It’s my story of who I am becoming. But it’s definitely a work-in-progress. I wonder how the book of my life will unfold? I wonder what it will all become in the end?


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.

Who is the REAL you?

“As a face is reflected in water, so the heart reflects the real person.”– A Proverb*‬ ‭

Who are you?

Do you ever ask yourself that question?

Who is the REAL you?

I am not talking about the social media you, the work or school you, the church you, the you you display for the benefit of others, or the you you wish you could be.

I am talking about who you really are?

When you are alone.
When no one else is watching.
When it is just you and your thoughts.
When you do not have to pretend anymore.

I really do believe that a big part of contentment comes from knowing who you REALLY are and what you believe about life, and then having the courage and integrity to be that person in EVERY part and place of your life.

Duplicity is exhausting.
Authenticity is freeing.

Authentic integrity comes when your boundaries, ethics and morals are the same in EVERY context. There is no need for lying, acting or pretense. You are not different with different people.

Because you know who you really are!!

“Knowing is not enough; we must apply. Willing is not enough; we must do. “– Johann Wolfgang Von Goethe

Of course we need to learn what is required of us in different contexts. We will not be as relaxed with a group of strangers as we are with our families at home. And yet I believe that we can still be authentic in every situation, without telling people EVERYTHING! 

Authenticity is simply about being ‘REAL’ and genuine. It’s doing away with pretending. It’s linked to humility which is being honest about our reality – whether good OR bad.

You do not need to make yourself appear better or make yourself look worse. You are not trying to ‘impress people’ or trying to get them to like you. It’s just being honest in all you say and do …. however that makes you look, regardless of how others treat you!

from darkness

I have learnt a lot about humility since I started this blog! I really do believe some people think that people like me start writing publicly or similar, assuming they are good at it and that people will want to read what they have to say. Or out of pride – to get their ‘name’ out there in the world and share their opinions.

Of course that might be the motive of some!

But I have learnt how much humility and vulnerability it can take to write and launch it into the public realm. Particularly when you decide to write with brutal honesty about both the good and the bad times, the pain and the moments of celebration, your strengths and your weaknesses.

Writing has been a humbling journey for me. When I post my writing online the ‘insecure me’ whispers…. ‘why do you bother, is anyone actually going to read it, what if they don’t like it, will it really help someone else, are you actually achieving anything here or wasting your time?’ But the ‘courageous me’ tells my insecurity to keep quiet and says… ‘I am going to post it DESPITE all of the above. If it helps one person then it is worth it and if it helps me to work through my own thoughts, then it has purpose there too!’

You soon realise people who ‘put themselves out there’ to write, produce music, create artwork, go on TV or publish talks etc, ALWAYS do so facing the challenge of ‘public opinion.’ Sometimes it’s actually easier to stay quiet and hide in the background, than it is to put your name to something and post it for all to see. Particularly when you are revealing very real, and sometimes very raw, information about your life journey.

“To put our art, our writing, our photography, our ideas out into the world with no assurance of acceptance or appreciation – that’s also vulnerability.”
– Brene Brown

But if we want to truly connect with others, we need to share our WHOLE story, even when it makes us feel vulnerable or uncomfortable. The story of the REAL us. And that will always be a challenge in a world of ‘opinions’. It is hard to share your heart when you are unsure of others reactions, or if you fear rejection.

“It takes courage to grow up and become who you really are.” – E.E. Cummings

It certainly takes courage to be bold in who we really are!! Regardless of what others think. To be the same person whether alone at home with our family or writing publicly for anyone to read.

And yet,

Sooner or later our true hearts will begin to show and be reflected through our actions and words. People around us will begin to see who we truly are anyway.

So why try to hide it?

Why cover it over and try to present a ‘better version’ of me! It’s better they see the ‘real me’ early on so it doesn’t instead creep up on them when they least expect it. If I pretend to be someone I am not, people will just get disappointed in the end – when they discover I am still full of faults and weaknesses.

I want to be known as a person of integrity. Someone who is solid and unchanging in every context. A person who’s true heart is openly displayed for all to see.

The good AND the not so good.

So that there is no duplicity, there are no unwelcome surprises for those who are getting to know me. If I am being kind – I really do mean it! I am not then going to say ‘unkind things’ about you when you are not around to hear it.

It is only then that I can know a depth of relationship and human connection with others that comes from allowing myself to truly be KNOWN. A love that allows itself to be seen and shown, regardless of how it is received. A grace that accepts and opens it’s heart to who others really are – regardless of their weakness too.

A heart that is tender and open. And welcomes others to freely join with me on our challenging human adventure through life. An honest journey of…

Up’s AND downs.
Joys AND pain.
Failures AND victories.

So that we can learn, encourage, cheer one another on and grow together. Because it’s in the TOGETHER that we will find our true strength!

Especially when our together, allows us room to be our true ‘exposed’ selves as well – and chooses to love and be kind regardless….. Whether we always agree with one another or not!

There is such beauty in our unique human diversity anyway?

“Art finds its deepest value when it is the authentic expression of a deep human experience. Art becomes profound when it exposes us, explains us, or inspires us.” – Erwin McManus


*Proverbs ‭27:19 from the Bible. 

Grappling with the Shame of Having a Rare Invisible illness

“Shame is a soul eating emotion.” – C.G Jung

In 2016, over a period of a few months, I came to realise how much shame I was carrying because I was still unwell, over 20 months, after a ladder fall left me with a debilitating spinal fluid (CSF) leak, somewhere in my spine. I write more about that journey of learning about shame and the devastation it can bring in this post ‘The Shame of Chronic Illness and Pain.

It was a journey of realisation and revelation following researching and contemplating what SHAME actually is and how damaging it can be in our lives. I was inspired to think about shame following reading Brene Brown’s book ”Daring Greatly: How the courage to be vulnerable transforms the way we live, love, parent and lead.’ The book encourages us to find the courage to be honest and vulnerable about who we REALLY are. It also talks a lot about shame and how destructive it can be in our lives and relationships.

“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

Reading the above words inspired me to write publicly about my realisation that I was carrying a lot of shame about the fact I was STILL very unwell. This had been made so much worse by the many battles to get properly diagnosed and then treated. Which many who have rare illnesses/ diseases can face. That includes many of us suffering from CSF leaks whether caused by an accident, purely spontaneous, from a labour epidural, C-Section spinal, a lumbar puncture or other medical procedures such as spinal surgery.

Many of us have faced doctors who have disbelieved us, or at least, disbelieved how bad our symptoms and pain are. We have been on a journey of misdiagnosis and seeing various different medical professionals, until finally finding doctors who understand and can help us. (When you do finally find those doctors they are valued, appreciated and loved more than they will ever know.)

And it’s simply because many doctors do not know much about CSF leaks. In the end, when we do get diagnosed, we are often told how ‘RARE’ we are. Although recently, it is becoming clearer that we are not actually as rare as people once thought – just commonly misdiagnosed, or even ignored, in the past.

Fighting to be heard when you are so very unwell is utterly exhausting and often completely overwhelming. Fighting your case when you are healthy is hard enough. But fighting when you are sick can be an utterly demoralising, shame filled, journey that can leave you with a potentially deeply dark despair. Especially when you are no longer confident that ANY Doctor will really listen and learn, what they need to, to help you.

Shame is that feeling of ‘I am not enough’ or ‘I am not good enough’. You can feel like a failure – not necessarily because of something you have done wrong, but because of who you are, or because of the circumstances you find yourself in, often due to no fault of your own. Sometimes simply because you have a medical condition, or something in your life, that most people just do not, or even refuse, to understand. You feel embarrassed, ashamed and humiliated and can then wonder if there is something really wrong with you as a WHOLE person. You think ‘perhaps I am just not ‘good enough’ or ‘strong enough‘ to do this, why can’t I ‘be and do better’ than I am doing… why do they not understand and listen?’

…. and SHAME begins to relentlessly and often unknowingly eat away at you!

Shame really messes with your mind and emotions and brings a whole spectrum of reactions from – hiding away from other people and getting lost in your own failures and problems – at one end – to getting angry, blaming others and lashing out, for the feelings you have – at the other. And often then trying to cover up your shame by pretending and putting up a front – in between it all. Sometimes we deflect the shame by blaming someone else. But often the fact is, whether or not someone else has directly or indirectly added to or even caused your shame, the soul destroying emotion of shame is still owned by us and we are the ONLY ones who can truly face it and deal with it.

Whilst we simply blame others for it, we won’t be able to get free.

Shame quote 2

I really do believe many chronically ill people, particularly those with a rare condition or invisible illness, can carry a lot of SHAME from their difficult journey to be heard, supported and helped.

Shame…… that we are ill in the first place and can’t ‘overcome it’. Like other people can with ‘normal’ or less severe illness, and sometimes even more severe cases that can be more easily fixed or treated.

Shame…… when you know the doctors AND even sometimes members of your own family and friends are wondering if it’s ALL or at least PARTIALLY ‘in your head’. When the reality is your body is not actually functioning anything like how it should.

Shame….. that however much you try to engage with life, and ‘push through the pain’, you are still so exhausted by it. It daily feels like you are running a marathon after being whacked round the back of your head with a baseball bat. But you are also very conscious that you do not want to keep sounding like you are complaining and being negative. So you try to smile and chat ….so in reality many people often do not know or really understand how unwell you actually are. Until you have to leave and retreat due to the immense pain and inability to cope with the trauma in your head and body, so as to HAVE to get back to relief of lying flat again.

Shame…. that even when you ‘look well’ in reality nothing has really changed since last month when you ‘looked well’ for those couple of hours, or so, you managed to be ‘upright’ and out, or with others at home (even though in reality most of that time your body was actually screaming at you to get flat again so your brain could get back into its right position in your skull).

Shame….. when tests and scans come back negative and do not correspond with how severe your symptoms are. So you lack the clear, non subjective, medical evidence you need to ‘PROVE’ to others how unwell you are. (Although even having evidence does not necessarily always help and does not always correspond with how bad your symptoms are anyway).

Shame.… when someone asks you how the ‘headache’ is and you really want to scream at them “it’s not just a headache!!! Please stop just calling it ‘a headache’!! It’s a complex and debilitating set of neurological symptoms, pain and a feeling of trauma throughout your whole body which gets increasingly worse when I am upright until I cannot cope anymore.”…. But you instead calmly reply ‘yes, it’s still there!!’ (And has been for over two years …. every day…. most of the day…..when I am actually able to be upright).

Shame.… for the daily feeling that your life is currently so ‘small and insignificant’ because you can’t DO very much anymore. So you no longer feel like a fully functioning member of society. And can’t even fathom what a day with no pain and symptoms feels like any more.

Shame…. that you have to spend so much time in bed, because with spinal CSF leaks the only time you feel fully well is lying FLAT IN BED. (But it’s out of necessity – NOT a relaxing lie in… at times my bed can feel more like a prison than a retreat).

And the shame can pile up….

….shame….
upon shame.….
upon shame …… upon shame!!!

After every new appointment, after seeing ANOTHER doctor who doesn’t understand, after every test that comes back clear, after every social event you have to miss, after every month you can no longer work.

…and after…

Every person you have to tell every day, every week, every month, every year that you are STILL not well and there is still no clear end in sight!

Shame quote copy

I found so much freedom from that shame over the last year. But sometimes something new brings it back to the surface. It creeps back up on me again and attempts to sink it’s toxic claws into my thinking and emotions. I then realise I still have some underlying shame there …. or at least it’s destructive sticky residue is lingering and refusing to leave.

So as Brene Brown advises, I am again choosing to speak it out in this new post. And to say to others – “I feel your shame too, I feel the exhaustion of the fight, I feel the anguish that the nightmare seems to never end and the chaos it’s brought in your family and relationships.”

Every time I read about another suffering soul facing ANOTHER exhausting battle to be heard – I feel that despair with you!! I have been there, I have walked, and still walk, that never ending road of endurance. An endurance you are not always sure you will still have the strength for tomorrow.

A road I did not choose myself, but wake up to every morning – with no other option than to get up and face another unbelievably exhausting day of trying to LIVE LIFE with relentless debilitating  neurological pain and stiffness (head and spine), brain fog, mental and cognitive fatigue and impairment, body and limb weakness, vision issues, tremor, shaking and much much more. And have to dig deep daily to CHOOSE calmness, kindness, thankfulness, love and hope DESPITE it all!

Which is not easy!! 

I have also known the darkest of nights when you convince yourself that escaping life itself must be better than living it like this…. and then ALSO then felt the shame of being the one who ‘couldn’t cope anymore’ and was now mentally unwell too. The one who couldn’t endure how she hoped she might. The one who fell apart when she reached the end of herself after a year of health battles and disappointments.

And that is why I know, although I am only one voice, I am one voice speaking for many!! Speaking up is ONE of the things I can still do. So I hope as I say it this way – we can also become many voices united as one.

To remind people (especially doubting medical professionals and doubting family and friends) that until you have walked our path and we have walked yours – we have no REAL idea how hard the other person’s journey has really been and is.

So please don’t assume you know! And we will try our best to do the same for you!

Just because my case is ‘unusual’ and you don’t understand it. Just because my physical condition pushed me over the edge mentally. It doesn’t mean that it is mainly psychological and that I do not have a complex medical condition that leaves my body utterly debilitated. If you lived in MY body for a day – you would soon find that I do not have a simple ‘headache’ like the headaches you have probably known that go away with a couple of pills or a good nights sleep!! 

We just ask that you PLEASE listen and allow your mind to be opened, rather than try and force us into the boxes of your limited understanding and experience. I do not expect you to know what you don’t know. But I would appreciate it, if you could just listen and try to understand, and humbly realise that you perhaps do not know as much as you think you do about what is wrong with MY body.

Because….

Until you have watched your health being ruthlessly stolen from you overnight – with no clear assurance of getting it back any time soon. Until you have known the agony of mis-diagnosis and constant questioning from medical professionals unsure of what to do with you, in part, due to a lack of knowledge about your ‘rare’ invisible condition and subjective pain scales. Or worse – until you yourself have faced being ‘interrogated’ by disbelieving, and defensive, medical professionals who think they know – what in reality they obviously don’t. (We are so very very grateful to those who acknowledge what they don’t know and do choose to listen and learn with true humility regardless.)

You do not really know what it is like!

But when you do ‘get it’ or at least try to, then you are welcomed into a new family of others who do KNOW! Who have lived through the devastation of a rare debilitating invisible illness and walked a similar path either personally or alongside their loved ones, close friends or with many of their patients.

When your eyes, ears and hearts are opened and you meet others who have faced a similar pain and carried a similar shame – you know you are not alone! It gives you more fuel for the fight because the battle is no longer JUST YOURS. You are ALSO fighting on behalf of the MANY. Those walking with you AND those coming behind you.

So today I again choose to throw off my shame by SPEAKING IT OUT – so that I can take another’s hand. And say…. “yes this journey is so very tough…. yes the battle often seems relentless….yes we can’t be sure what the future will bring… and yes you will often wonder how you will ever endure the never ending storm.”

But we can fight TOGETHER!!

Some days I struggle to find the strength to fight for just ‘me’! But it’s then I must remember – it’s not just me I fight for!! I fight for you, your family member or loved one. I fight for the person, family member and loved one who will come behind me.

I fight with, and for, all those who know the relentless exhaustion of battling a rare or chronic invisible illness and pain.

WE also fight with, and for those of you, facing any challenge in life that feels beyond you at the moment. Because WE know what it is to have to choose to keep on going, and keep on living, when some days WE just really want to give up and escape it all.

So will you join our fight of many TOGETHER?

Because it’s then… That I find I can dig EVEN deeper. Deeper than I have ever gone before. To find the strength to endure OUR storm TOGETHER!

Because this life shouldn’t just be ALL about ME and MY struggles and pain. It’s about US finding a way to navigate through and endure the ups and downs of life together – as equal broken specimens of humanity. So that on the days I feel like I am falling back into a pit of despair, when EVERY part of my debilitated body screams at me to give up the fight. I know there is someone else who can reach down and grab my hand as I start to fall – offering empathy, love, compassion and strength – whilst also helping to pull me back up to face another day. Then tomorrow it might be my day to reach down to you, as you fall, and help pull you back up to face another day too.

And that way we will break away from the shame that tries to chain us up! AND dig deep to ENDURE the tough times TOGETHER!

Life is ALWAYS better when we face it TOGETHER!

“Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble. ….. A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken.” – The Bible (Ecclesiastes 4:9-10,12)


Do you feel that shame? We all carry shame in some form. Please do comment below – if we can speak it out then perhaps TOGETHER we can beat it!

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.

Writing to explore what life is about, in the hope that we can learn, grow and be inspired together.