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.

Learning Calmness: Flowing through life with a spinal CSF leak

“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.

Learning Inner Calmness verse copy

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.

Reframing Negatives To See The Positives

The expressionREFRAMING 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 negatives copy

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.

reframing negatives LIVING copy

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.

reframing negatives voice of hope copy

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.

What You Say Flows From What Is In Your Heart

Kind words can be short and easy to speak,
but their echoes are truly endless. – Mother Teresa

Have you ever wondered what is going on in someone’s heart? Who they really are and what they really think?

One sure way to work it out is to listen to what they say! What words come out of their mouths? What words do they write down/ type and share day after day.

In the Bible Jesus said…

“What you say flows from what is in your heart.” – Luke 6:45*

He is explaining that our words are connected to what is going on inside us. They are connected to our true hearts.

Yes of course we can pretend or say things we don’t really mean. But if you spend a lot of time with someone long term and listen to what they are saying, you will soon begin to get a picture of what is going on in their heart.

But the same is true for us! Have you ever stood back to consider how your own words paint a picture of what is going on within you?

Is your heart….
Tender or hard,
Loving or hateful,
Understanding or judgmental,
Forgiving or revengeful,
Sweet or bitter,
Cold or warm,
Kind or unkind,
Humble or proud?

heart shaped  in sand

Love is one of the main things that should show through your words.

If you love someone with your whole heart, it should be obvious in the way we speak to and about them.

I personally believe love resides in our hearts like a beautiful song. If our hearts sing with love, our words should sing with that same love. And everyone should be able to hear the song of love in and through our words.

That’s one of my personal goals in life – for my words to sing with an otherworldly love that can only come from knowing the unfathomable unconditional love and grace of God.

If I am truly in love with God, and desire to love others wholeheartedly, you will hear it in the way I speak, write and act.

“When you know how much God is in love with you then you can only live your life radiating that love.” – Mother Teresa

When you fall in love with someone, you can’t stop thinking about them. You constantly want to talk to them. You desire to be with them. You will find yourself wanting to tell others about them.

Love is such a powerful and all consuming force. And yet we can get so comfortable in our love for others, that over the years it can wain in its intensity. That’s when the cracks appear. Our words get a little harsher, a little less patient, more critical, more negative, less understanding, more self focused.

We convince ourselves that this is the other person’s fault. Perhaps if they were more lovable and loving it would be easy. Maybe if they weren’t so infuriating and selfish we would have more positives to say.


“Love resides in our hearts like a beautiful song.”


But what if we turned that on its head a moment and thought…

What if the problem is not mainly ‘the other,’ what if our main problem is our OWN hearts? If our words are becoming overly negative what does that say about what is going on inside us? What does that say about the quality of our love in the first place?

True love is not a fleeting emotion!

“Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.” – 1 Corinthians‬ ‭13:7‬ *

Love to me is ALWAYS unconditional. It is selfless – thinking of the other first. It is patient and kind, persistent and persevering. It’s full of grace. It is not easily angered, proud or self seeking. It covers over faults and loves regardless of weaknesses.

The challenge for me is that if that is the love I believe is in my heart. That love should then be revealed and shown through my words and actions.

Do my words sing with the love that I say is in my heart?

What do my words say about what is truly going on in my heart?

That’s a challenge to me. I certainly daily make mistakes. At times my words can be too harsh – especially to my family or when I feel particularly ill or get very tired. But I do want to do better, I can always be more positive, patient & understanding, even when exhausted and in pain.

Maybe we could take some time to consider that this week. Try and listen to what you say. Think about why you speak like you do.

You never know, you might discover that too many of your own words are negative, critical and hurtful. We all have ways we can improve in our communication with others. We can all be more kind and understanding. We can think more about how we can treat others as we would want to be treated.

What do your words reveal about your heart?

“What you say flows from what is in your heart.” – Luke 6:45

“Be generous with your time and your resources and with giving credit and, especially, with your words. It’s so much easier to be a critic than a celebrator. Always remember there is a human being on the other end of every exchange.” – Maria Popova


*Verses from the Bible

Being Real Whilst Staying Positive

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

Abstract background

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.”

Abstract background

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.

‘Why Me?’ The Soul Destroying Question

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

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.