Tag Archives: Chronic Illness

Suffering into a Deeper Spiritual Awakening

April 28, 2018 Becky Hill 10 Comments

“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.

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.

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.

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.

Perspective, Spinal CSF Leak

Embracing Simplicity

August 16, 2017 Becky Hill Leave a comment

“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.

Suffering & Grief

The Humility That Is Found In Suffering

June 24, 2017 Becky Hill Leave a comment

“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.

Spinal CSF Leak, Suffering & Grief

Grappling with the Shame of Having a Rare Invisible illness

April 25, 2017 Becky Hill 9 Comments

“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.

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!

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!

UPDATE: Please note that in August 2020 I was also diagnosed with arachnoiditis as well as a spinal CSF Leak – I now have radiological evidence to support both those diagnosis. To read more about the new diagnosis please see this link.

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.

Perspective, Spinal CSF Leak

Learning Calmness: Flowing through life with a spinal CSF leak

April 1, 2017 Becky Hill 7 Comments

“Real contentment must come from within. You and I cannot change or control the world around us, but we can change and control the world within us.” – Warren Wiersbe

My journey over the past 2 years, or so, with a spinal CSF leak has been a journey of discovering deeper inner contentment, DESPITE physically battling the unending storm of so many physical limitations and chronic pain.

I have learnt more than ever over those 2 years that inner CALMNESS is the only way to flow through life with a CSF leak. Stress, worry, constantly pushing through symptoms too much and rushing about, simply make me feel incredibly ill and physically (and consequently mentally) anxious. They only exacerbate intense neurological symptoms.

So I am learning to…

Move slower
Think slower
Be slower

And surrender to a quieter calmer life.

This has not been an easy journey for me for many reasons…

I have ALWAYS lived a very full and busy life.
I was used to living at a FAST pace
I had bought into the lie, to a certain extent, that how busy you are equates to how significant your life is. As I wrote about here a while back.
CSF leaks mean you struggle to function upright for a long (or sometimes even a short time – as in my worst times) which brings a natural anxiety when you are feeling very ill.
Pain is not in anyway calming.
Parenting and calmness can be very challenging at times. (Especially when kids are fighting).

Because of this there were a number of things I had to face and let go of. That has been a process and a journey I am still on. So I have had to…

Let go of the need to be ‘someone’ and be ‘doing’ something significant and instead embrace the ‘me’ of this season and what I can do here.
Stop connecting my identity to what I do.
STOP ALL ‘rushing’ because my body simply can’t handle it.
Take each day as I can.
Learn to flow with my body and take regular lying flat breaks – rather than heroically trying to constantly to push through pain and other exhausting symptoms. (Most hours of being upright for me involve pushing through symptoms, I could not live life without ‘pushing through’ pain, exhaustion, brain fog, nausea etc. But it’s learning not to ‘push’ too much to my absolute limit, which will inevitably bring an element of physical and mental anxiety, as my body screams at me to lie flat and be released from the intense exhausting tension of being upright).
Be OK with missing out on events and things I used to enjoy.
Removing myself from stressful parenting moments – when appropriate – so as not allow stress/ raising my voice etc to make my symptoms worse.

I have had to rediscover the place of…
Peace….
Calmness….
& Tranquility….
Within me more deeply and learn how to maintain it as much as possible. This involves keeping control of my thoughts & embracing the deep serenity found in my spirit.

I have a wonderful friend who has kindly supported me a lot in this season. Who has helped me to see how to live more fully present in each moment. And to approach my ongoing health problems through ‘acceptance with hope’. This means facing and accepting my current limitations, so I can truly LIVE and embrace life here, whilst also holding out hope for a healthier future.

I read the Bible daily for wisdom and spiritual encouragement and it also talks about living in this present moment, not worrying about tomorrow, letting go of the past, whilst hoping for a better tomorrow. They are all things that have been a part of my life for decades.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” – ‭‭Matthew‬ ‭6:34‬

“…I focus on this one thing: Forgetting the past and looking forward to what lies ahead,” -‭‭Philippians‬ ‭3:13‬ ‭

However, having a spinal leak has meant I have had to delve further into these truths. So as to find the place deep within me where the river is serenely calm. It is always there – but some days it’s easier to find than other days. Sometimes the storminess above it clouds it from view. There are also times the surface pain distracts from that inner peace, because pain shouts at us so loudly.

The sky is ALWAYS blue way above the storm. If I can focus on the consistency of the blue sky above I can then dive into that river of peace within me and swim in its warm calming waters of love.

Some days and moments peace can feel elusive, you search for it and it’s a battle to find it. No sooner have you found it and get ready to dive in to its peaceful waters that you lose it again as some other anxious thought breaks in, as another memory unsettles the heart, as the pain takes over and the exhaustion floors you.

When I had a mental and physical breakdown at the end of 2015 I could no longer find that tranquil river within me anymore that had anchored me all year. It was still there but it was so hidden from me because of the chaos of my mind and body. I felt completely lost at sea, drowning in a whirlpool of negativity and mental deception.

Fear screamed at me!
Anxiety shook me!
Despair consumed me!
Exhaustion overwhelmed me!

I just needed it ALL to stop.

2016 marked my journey of acceptance and mental and spiritual recovery. It was my time of learning to LET GO. I had to conquer the anxiety that bound me. I had to find my new identity. I had to learn how to keep LIVING in the chaos and unknowns.

I had to….
look deeper
reach deeper
dig deeper
find deeper

Because I knew that was where the river of peace still flowed. I knew I had to learn how to dive in deeper.

I realised I had to go where I had never been before.

That journey has been an adventure. A journey of both gritted teeth endurance, as well of a satisfying joy. A journey of discovery and rediscovery. A journey of realising a deeper and more profound love that overwhelms the fear. A journey of not focusing on what I don’t have but celebrating/ being thankful for what I do so I can make the most of LIVING here.

God showed me the way. He gave me the sign posts. He brought the people I needed at the right time. And He spoke through the voices He placed around me. He gave me friends and loved ones to cheer me a long the way.

It’s April 2017.
I have been unwell for 2 years and 4 months.
It’s been the hardest season of my life so far.
My life looks very different to the one I lived before.

But I am a different person. If you look closely the old Becky can still be found. Many people will not see the change from the surface. My passion for God, my love for people, my fondness of communication and words are all still there. But if you watch me, if you listen to me, if you compare me to who I used to be. There is a deep transformation within me as well.

Perhaps not recognisable to everyone, but very clear to me.

And it is intrinsically linked to an increasing CALMNESS. A decision to FLOW through each day, whatever it may bring. An ability to ‘let go’ more easily and throw off the chains of worry and anxiety. A greater ability to make the most of every opportunity. More depth of wisdom…

…as I have been OVERCOME…

BUT THEN…

…became the one who OVERCAME!

Yes this Becky is very different and even though I never want to relive those dark days again. Even though I daily wish I didn’t have to dwell in this debilitated body. There is no lesson more profound than meeting the full extent of your weakness and failure face on and falling apart in a way you never imagined possible….

To then rise again despite it all…
stronger yet calmer,
wiser yet more humble,
broken yet fuller,
different yet still me.

There is always more peace to be found. It is always being offered to us as a gift. We just sometimes have to take a journey to realise how much we need it. And to learn how to break through the storm around us on the outside, so that we can then dive into the tranquillity that can only truly reside within.

“Real contentment must come from within. You and I cannot change or control the world around us, but we can change and control the world within us.” – Warren Wiersbe

Jesus said, “”I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid.” ‭‭- John‬ ‭14:27 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.

Perspective, Spinal CSF Leak

Reframing Negatives To See The Positives

March 16, 2017 Becky Hill 1 Comment

The expression ‘REFRAMING NEGATIVES‘ to see them in a more positive light, captured my attention recently. One of my friends had been talking about it and then a couple of days later I happened to read it in a book as well. I really liked the concept and have been pondering how I can apply it to my own life and current health challenges.

How can I reframe a negative situation so that it can be viewed more positively?

It’s often not easy to do this when you are facing challenging seasons. But I do have to ask myself daily – what is my other option? I could spend each day dwelling on, and being overcome, by all the negative implications of my current restrictions. But then I am just going to end up in a cycle of despair and frustration.

I have been there and it is fruitless, so very destructive and just makes me feel worse in every way.

So my only other option is that I have to reframe it! I have to find some positives here!

Reframing is simply about looking at something with a different perspective. It’s about seeing ourselves, others, a circumstance or situation with new eyes. It can be a powerful and transforming process if we can fully embrace its potential.

“The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.” – Marcel Proust

Our lives here are such, that there is always a sense of uncertainty about tomorrow. Yes there are some things we can predict, believe or hope for, because of decisions and choices we make today. But very little of our day to day existence in this world is truly fixed. There is an impermanence about our current lives. We all have to dwell in these fragile bodies that are subject to death and decay.

And yet there is also always a bigger picture we can’t see. I may only know the significance of today when looking back from the hindsight of tomorrow. Some parts of today may look desolate, like the deadness of a tree in winter, but perhaps my spring is coming somewhere around the corner. Maybe green shoots of life will again appear and grow from what currently looks almost dead. And that may look very different than I can perhaps imagine with the limited perspective of today.

Perhaps tomorrow can and will be better than today. Or perhaps tomorrow will bring even more challenges. But then in the weeks, months and years that follow, things might again be totally turned around.

We often just don’t really know what the future might bring!

I regularly have to look at my current health problems like that. I can see how one day, if fully recovered, I would get to look back, and whilst not forgetting the struggles of this season, I would by then be more able to focus on the lessons learned as well as the depth gained.

But that perspective is so much easier to SEE when approached with the gift of hindsight. When the storm is finally over it’s easier to look back and be thankful about the fact you survived and have learnt so much from walking through it.

And yet,

It’s not so easy to do that when you still feel stuck in the storm and there is currently no true ending in sight. You are weary from the mountain of disappointments, you are tired of hoping and believing it will soon come to an end – but then it never does.

But life still has to go on regardless!

The storm won’t yet clear – but life is still happening, time is still ticking away.

We have to find a way to keep on LIVING in this limbo – however long it lasts. I have to find ways to REFRAME the life I find myself living and find a way to live the FULLest life I can, amidst all it’s challenges and restrictions.

The unfinished painting, that is my life, is not looking as I hoped and intended it to look after 37 years on this earth. But rather than hide my unfinished ‘work in progress’ life painting away in the shame of its current state.

I have to choose to reframe it and hang it up for all to see – both the darkness AND the bright colours of this season. To show others that even the dry desert seasons, that seem to rob us of who we really are and want to be, can also produce exquisite detail. Detail that will reveal a new level of vulnerability and humility, if we let it. A deep work that brings growth, maturity and a better perspective during the struggle’s of this life.

I may not get to choose whether I walk through this road of chronic illness and pain. BUT if I can’t find a way to keep on LIVING here, how can I ask others to keep on LIVING and persisting in their own wilderness or stormy seasons? If I can’t reframe my own challenges to see the potential beauty here, then how can I support others to discover beauty when they are going through even tougher times than me.

I have a responsibility to my family and those around me, to find a way to reframe my struggles, challenges, weaknesses and failures. Until they become a voice to help encourage others in their own wilderness times.

Everyone faces battles that feel beyond them, at some point in their lives. And when we do, we need those voices that help us press in for the fight. People that understand both the pain of suffering and struggle, as well as finding a way to truly LIVE and press forward in its midst.

We need to hear the message that TOGETHER we can rise above the darkness of today. Until, even in the midst our own pain, we can become a beacon of hope to another.

So I choose to hang my ‘work in progress’ life painting where it can be fully seen. With all of its inaccuracies, imperfections and shadows. With both the lighter AND the darker shades both fully exposed. So that TOGETHER we can choose to SEE something different. And realise that the most inspiring and beautiful works of art are often not the ones of perfection. They are instead, the ones that tell a unique, expressive story of a REAL life lived.

A life of BOTH light and dark moments that are being made beautiful. Because the artist chose to see the potential of different shades of colour mixed together. A story that is being written to express something extraordinary. A masterpiece that will only become a masterpiece when it is finally finished. And when it is finished the times of preparation, rubbings out, mistakes, corrections and so many reworkings are no longer even perceived underneath.

A painting which tells the story of one person’s life journey. A human journey of both joy and pain, sorrow and laughter, suffering as well as true peace.

A picture that most of all I hope will tell a story of true love. A story about how it is love alone that truly conquers the darkness. It is love that can reframe any negative, until it ultimately becomes something far more vibrant and beautiful in the end. It is love that chooses to fight and never give up, even when our body is failing us.

So let me reframe my current challenges and see them in the light of love. How can I love in the midst of my ongoing storm? Who should I show love to in THIS season? How can I serve others around me, despite the many limitations of today?

So I welcome you into my world, with love, hoping and praying that TOGETHER we will find a better way through. That we can walk with each other celebrating the brighter seasons, whilst ALSO helping one another to reframe the darker moments of our lives. As well as the many many different shades of life in the inevitable seasons of the ‘in-between’.

“God had a purpose He knit you together for
But life has pulled at the seams
And you’re unravelling
And you can’t hold it together anymore
But God will, He will finish what He started
No thread will be left unwoven
Nothing will be left undone…..
But when He’s finished we will SEE
A beautiful tapestry
And know that nothing has been wasted in the end.”
– Steven Curtis Chapman ‘Finish What He Started.’

“For we are God’s masterpiece…”
‭‭Ephesians‬ ‭2:10‬ ‭(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.

Spinal CSF Leak, Words & Writing

Being Real Whilst Staying Positive

February 21, 2017 Becky Hill 3 Comments

Authenticity is really important to me. I have learnt that it is where true freedom lies. It’s when you have realised that you do not have to maintain a certain image or pretend your life is better than it is.

It’s liberating to just be you.
The real you!
With your strengths AND weaknesses.
Your failures AND victories.
Your achievements AND embarrassments.

When you have nothing to hide, you do not need to fear others finding out about who you really are. There is no need to ‘impress’ anyone.

Pretending is just far too exhausting anyway!

“When people have integrity, their words and deeds match up. They are who they are, no matter where they are or who they’re with. People with integrity are not divided (that’s duplicity) or merely pretending (that’s hypocrisy). They are ‘whole’, and their lives are ‘put together’. People with integrity have nothing to hide and nothing to fear. Their lives are open books.” – John Maxwell

However,

I sometimes wonder – How can we be ‘real’ without wearing our heart on our sleeves the whole time? Shouldn’t there be limits to our transparency? How honest should we be with people on a wider scale?

Is it better to sometimes stay silent?

Of course it sometimes is!

There are many occasions where it would not be helpful or wise to divulge EVERY little detail about our thoughts, feelings and lives. Personally, professionally and socially.

However, I believe we can stay authentic and yet still hold back, but it’s an attitude of the heart. We can keep information to ourselves and those close to us, without hiding or pretending. It’s all linked to having a humble heart. It’s all about our motive for sharing information or keeping it hidden. Having wisdom to be aware of the context we are in, and judging how appropriate our words might be.

“When we are humble, we are down to earth. No energy is wasted on pretension. A humble man can be taken at face value.” – Erwin McManus

For me having a chronic illness means every day is a battle of sorts. It is the daily battle of positional (upright) unbearable headaches and other nasty neurological symptoms caused by a 2 year persistent spinal CSF Leak that we cannot yet find.

Most days I see people at my daughters school, in the street, at the shops or at church. And they often ask that daily question – “How are you?”

And every day I struggle to answer!

How can I be ‘real’ without launching into a long narrative about all the daily battles and challenges? How do I respond to the ‘how are you’s’ without sounding moany and negative?

And to be honest – do you really want to know anyway? Or should I just respond with the classic ‘fine thank you,’ because maybe I am actually ‘fine’ in a ‘but still battling a chronic illness’ way that day and maybe I don’t have the energy for a long conversation anyway.

But my desire to be authentic means I don’t want to lie either, I don’t want to cover over the reality. That is no good to anyone, because then I will just end up staying quiet and pretending and no one will realise how unwell I still am. (Which has happened before).

So I have had to find new responses ‘well at least I can be here today.’ Or these days I sometimes don’t say much and just smile at people with a ‘hmmm’ or I will say ‘I am not sure what to say – I am still not well, still waiting for new scans to try and find the leak, but I am very thankful that I am not stuck in bed as much as I used to be.’

Perhaps I should give out little cards that say…

“I feel unwell a lot of every day, but for now, I have had to accept it and live with it as best I can. I am better than I have been in the past. I have better moments and worse moments. I have days where I feel more positive and days that feel like more of an endurance test – than the normal daily endurance test of living with chronic illness and pain! But I also have so very much to be thankful for. Each day I have to learn how to live here and do the best I can to love others and help those around me.”

I don’t want to moan.
I don’t want to only communicate the negatives.
I want to stay positive.
I need to stay thankful.

But I also do want to be ‘real’.

So for now I will try my best to be as authentic as I can. Without sounding like a broken record (because most people have heard all about it before). I will try not to hide so that people understand me and the condition better.

But how about instead of me telling you all about me – AGAIN. Please tell me about the real you too. Your victories AND your failures. Your celebrations AND your struggles. So that I am reminded that we are ALL human and all face our own unique daily battles. Yours might look very different to mine. But I am sure there is something that you are finding hard too.

Because if we always just tell each other we are fine. Then we will stay stuck with our own limited and potentially self focused perspective. Never really knowing what battles other people around us might be fighting too.

And that would be a shame, because then we will miss out on the beauty of true human connection. Connection that goes so much deeper, because we can be honest about our ‘whole’ selves. So we can listen and learn more understanding from one another too.

In the hope that it will help us to become better, kinder and more compassionate humans together.

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.

God & Spirituality, Spinal CSF Leak, Suffering & Grief

‘Why Me?’ The Soul Destroying Question

January 19, 2017 Becky Hill 7 Comments

We all know that life is full of good and hard times. All of us have experienced wonderful moments and very difficult seasons.

Why is it that we rarely ask the question ‘why me?’ for the good parts of life. I rarely think about why I was so privileged to be born into a middle class British family, rather than to a young prostitute, in abject poverty, in the slums of Mumbai. Or why I got to be born healthy with all my body parts as they should be, unlike others who were born disabled.

Yet when hardship and tragedy strikes, these questions often come into our heads and take room in our thoughts.

Why me?
Why us?
Why this?
Why now?

For you, it might be a question asked in your own mind that you simply send out into the unknown. A question that asks why are we all here and what is this life about anyway.

Perhaps it’s a scream from inside stemming from comparison. Why did this happen to me and not them? It’s not fair! I am a better person than them and do more to help others and yet they are fine and I am stuck with this.

Or for those of us who know God, it can be a cry from deep within us – why did this have to happen? I don’t understand! Why should I have to suffer like this? Why should anyone have to suffer? Is it not within God’s power to prevent this? I thought he was supposed to be good!

The questions cause us to have to consider our life, beliefs, perspective and the world more deeply. They can draw us into impossible and exhausting mental gymnastics as we try and work out the intricacies of predestination, fate, acts of good or evil and whether things in life do all happen for a reason, or are purely a random set of circumstances.

But I have learnt the ‘why me’ questions don’t get me anywhere. And they naturally lead to the ‘why not me’ anyway. It’s then just a never-ending cycle of questions that wears us out.

I still believe in and love God deeply. But my accident and ongoing debilitating CSF leak/ Low Pressure Syndrome have naturally raised questions linked to my faith. This has, at times, been a difficult journey of wrestling with the unknowns and uncertainties, considering different answers and perspectives, learning new things, but then ultimately letting go of the need to know and accepting where I am at today.

In the end what has happened, has happened.
We cannot change the past – all we can do is learn from it and move forward.
Whatever that moving forward may look like.

There is undeniably pain and suffering in the world. Whatever you believe, you cannot deny that fact. So perhaps the question should not so much be;

Why is this happening?

Which we can never completely answer and can rarely control – unless our problems are self inflicted and/ or could be self resolved.

But instead perhaps we need to change the question to focus on;

What can I DO with my suffering?

It shifts the focus from getting lost in the complexities of unanswerable questions and things we cannot currently change and puts the focus back onto what we do have more control over.

Our RESPONSE to suffering.

Can I still find meaning and purpose here?

“Suffering can be what economists call a “frozen asset.” It may not look remotely like an asset at the time, but gradually we can find meaning in it, an enduring meaning that will help to transform the pain.” – Philip Yancey

Continue reading ‘Why Me?’ The Soul Destroying Question →

Spinal CSF Leak, Suffering & Grief

Choosing To Let Go…

January 13, 2017 Becky Hill 4 Comments

“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.

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.

Breaking Free, Spinal CSF Leak, Suffering & Grief

The Shame of Chronic Illness and Pain

September 12, 2016 Becky Hill 15 Comments

‘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?

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!

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!

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!

Here is my new summary video of my whole medical journey https://youtu.be/cKECz_fCnFw as well as footage of my January/ February 2021 adhesive arachnoiditis relapse/ flare and treatment with IV Steroids. To see my daily video diaries from this time please see my YouTube channel: https://www.youtube.com/channel/UC9ZkCy9B_IpeaGrXd0CEgow

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.

Becky Hill's Blog

Tag Archives: Chronic Illness

Suffering into a Deeper Spiritual Awakening

Embracing Simplicity

The Humility That Is Found In Suffering

Grappling with the Shame of Having a Rare Invisible illness

Learning Calmness: Flowing through life with a spinal CSF leak

Reframing Negatives To See The Positives

Being Real Whilst Staying Positive

‘Why Me?’ The Soul Destroying Question

Choosing To Let Go…

The Shame of Chronic Illness and Pain

Writing to explore what life is about. Amidst its captivating beauty and deepest pain. In the hope that we can learn, grow and be inspired together.