Category Archives: Perspective

Embracing Simplicity

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

Despite the restriction, debilitation and pain. 

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

Attitude is everything! 

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

BUT it’s just not true!

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


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

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

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

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

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

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

Compassion is a stunningly beautiful quality to have. 

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

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

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

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

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

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

None of us know what tomorrow will bring. 

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

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


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

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

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

Advertisements

What Is Within Us Is Who We really are. 

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

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

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

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

That is why words are so precious to me. 

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

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

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

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

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

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

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

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

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

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


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

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

Deep within me there is a whole other world. 

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

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

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

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

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

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

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

I really do love and value words so much.

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

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

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


*Proverbs ‭4:23‬ ‭The Bible

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

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

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

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.

Breaking Down The Walls Between Us

“So we can hate each other and fear each other
We can build these walls between each other
Blow by blow and brick by brick
Keep yourself locked in

Maybe we should love somebody
Maybe we could care a little more
Living for love, unafraid of the end
Forgiveness is the only real revenge

So we can heal each other and fill each other
We can break these walls between each other
Blow by blow and brick by brick
Keep yourself open.”

(Taken from the lyrics of Holy War by Alicia Keys)

Do you ever feel misunderstood? Those days and moments when somebody decides they think they know who you are, but you know that what they are saying and how they are acting shows that they don’t have a clue who you REALLY are?

Now let’s reverse the question.

Do you ever misunderstand others? You decide that you think you know who someone is and why they say and do what they do. But perhaps over time you realise that you totally ‘missed it’ and you didn’t or don’t have a clue who they REALLY are.

We can ALL make a lot of assumptions.
We hate being judged.
And yet we are guilty of judging.
Of assuming that we know.
When in fact we really don’t.

“Instead of condemning people, let’s try to understand them. Let’s try & figure out why they do what they do.” – Dale Carnegie

We live in a world of barriers and brick walls. We can build our little fortresses to protect us and ours and in protecting ourselves we can end up ‘locked in’ rather than ‘open’.

That is why I love the lyrics above (that I have edited) to Alicia Keys’ song Holy War. The song highlights how we have built so many walls between one another.

Walls of pride: My way is the best way.
Walls of hate: I don’t like who you are and what you do.
Walls of fear: Our differences scare and distress me.
Walls of hurt: Somebody hurt me and you might too.
Walls of misunderstanding: I don’t want to listen to you.
Walls of stereotypes: I already know who you are.
Walls of differences: Look at all the ways we are different.
Walls of revenge: If you treat me and mine badly I will treat you and yours badly.

And yet the more we lock ourselves into our places of safety, the worse it all gets. Our perspective becomes tunneled. Skewed by our own limited view. We don’t attempt to understand. We assume we already know.

But the trouble is, usually we DON’T KNOW!

from darknessI LOVE diversity. I have spent all my life with such a diversity of different people. People from different cultures, countries, ethnic groupings, social groupings, sexual orientation, different backgrounds, different faiths, different colours, super intelligent or with learning difficulties, the able bodied, disabled, chronically and terminally ill.

And I LOVE it!

I wouldn’t want to live any other way. I want to live, learn and grow all my life and I can only do that by opening up mine and my families life to diversity and difference. I would honestly get so bored only spending time with people like me! I need change and difference to help challenge, inspire and shape me.

I need YOU to make me a better ME!

I want my level of exposure to keep growing. To meet more people. To understand more about why YOU do and say what you do, and for you to learn why I say and do what I do.

“Instead of condemning people, let’s try to understand them. Let’s try & figure out why they do what they do.” – Dale Carnegie

This is one of the reasons I LOVE watching documentaries and reading books about other people’s REAL life journeys, battles, challenges and victories. It opens my mind and enlarges my perspective.

It helps me to be a better human.

I want to understand why people do what they do. Because it helps me to show empathy and love to others more. As well as helping me to understand myself more. It opens my heart and expands my mind.

Perhaps we are ALL more similar than we think.

The lyrics I’ve shared above help to paint a picture of why I believe we ALL need one another. To inspire us to spend more time with, and listening to, a diversity of other people. Bringing love and understanding to our conversations and choosing to learn more about each other’s perspectives. So that TOGETHER we can make the world a better place. It tear’s down all the walls and barriers of ignorance and fear that exist between us all. It is there that we realise we perhaps didn’t know quite as much as once thought we did.

The more I get to know people that at first seem very different from me. The more I realise that we have a lot more in common than we might at first think.

We are ALL human and we all live in this world TOGETHER!

It’s in that place that we learn that we can’t really hide away from the world, instead we all have to live and be here. You and me are stuck on this earth TOGETHER, whether we like it or not! And these days I am grateful that our world is a lot more mixed up than it once was. It brings so many more opportunities.

So instead of hiding maybe we could learn how to be more open. To reach out to others with open ears, hearts and minds. Ready to listen and learn. Ready to be challenged and changed.

Ready to be more human.

Ready to pull down the walls between us and do our best to build bridges instead.

Bridges of love: I am going to treat you how I want to be treated.
Bridges of humility: I still have so much to learn, (even when we disagree) teach me what you know.
Bridges of faith: I am going to chose to believe the best about you rather than the worst.
Bridges of healing: I will try to empathise and support you in your pain.
Bridges of understanding: I will listen to your perspective.
Bridges of acceptance: We are all unique individuals who can’t be put in a general box.
Bridges of similarities: We all have common ground because we are ALL human.
Bridges of forgiveness: We ALL make mistakes and get things wrong.

I know I would rather be a builder of bridges rather than a builder of walls. A person who chooses to break down these walls we have between each other.

‘Blow by blow and brick by brick’.

I want to keep myself OPEN because it is ALWAYS so much better than staying LOCKED in.

How about you?

People Will Never Forget How You Made Them Feel

“People will forget what you said, people will forget what you did, but people will never forget how you made them feel.” – Maya Angelou

Have you ever thought about how you make people feel?

I guess it’s quite a hard question to answer unless you ask people directly. And perhaps it’s a question which might sound pretty strange.

‘Excuse me, how do I make you feel?’

You might have to prepare yourself for all sorts of answers (if people choose to be honest with you that is!!)

Could you guess what some people might say?

It’s a really good question in self awareness. Am I aware of how others might feel around me? Do they feel safe, valued, inspired, loved and cared for. Do they feel good being around me? Or might they feel intimidated, insecure, embarrassed, frustrated or angry when I am about.

Do people like being with me? Or would they rather get away from me given half a chance?

(I am sure people have felt both with me – none of us are perfect. And to be honest some people just won’t like us however hard we try).

When I first saw the Maya Angelou quote, it really struck a chord with me. I first considered how true it is as I thought about different people I have met throughout my life.

However, it also really inspired me to want to be the kind of person that people like to be around. I want people to come away with a positive feeling from being with me. I want people to feel like I am interested in them and care about them.

“Whatever you want for yourself, do it for others. If you make even small acts of compassion a daily habit, you will feel empowered & liberated from your own hurts & disappointments.” – Nick Vujicic

I don’t think we consider enough how we make people feel.

img_5113
(Image borrowed from PINTREST )

Over the past 21 months I have spent a lot of time in hospital and seen A LOT of different doctors and medical professionals and to be honest there is whole wide range of feelings I have experienced from being with or around them.

Some doctors made me feel valued, cared for, like they wanted to help, that I was a person not just a patient, that they were interested in my case, that they wanted to understand my condition and were there to support me on my journey.

Others made me feel intimidated, scared, anxious, doubted, misunderstood, inconvenient and frankly really upset!

Same job title,
Different people.
Contrasting responses.

Some people make us feel good, others can make us feel bad.
Some have a way of doing things and saying things that helps you to feel valued.
Others make you feel very under valued.

Now I have to say here that I think we need to be careful about letting other people dictate how we feel. We can’t ALWAYS blame others for making us ‘feel bad’. We can sometimes misunderstand others because of our own insecurities.

Sometimes it’s not actually them with the issue.
It’s us!
And we need a level of self awareness to know the difference.

We need humility to keep ourselves in check. To ask ourselves if we could have done or said things better. Pride will always leave us feeling hurt and we then blame others for it.

And yet it is inevitable that we are not going to feel good when the experience is bad. I am not going to feel cared for and safe if the other person seems disinterested or I feel under valued and misunderstood.

However, all this is only relevant if we understand that we can rarely change the way others behave towards us. We can perhaps influence it by being respectful, understanding and kind.

But we can’t MAKE others treat us well!

The only thing we can control is ourselves. We can only take responsibility of our own behaviour and responses. Sometimes we could all learn a bit more self control.

“Any fool can criticise, condemn and complain – and most fools do. But it takes character and self control to be understanding and forgiving.” – Dale Carnegie

So lets keep asking ourselves that question and pondering:
How do I really make others feel?

Do you try to look for ways to encourage, appreciate or compliment others? Perhaps saying “You look great today or you did that really well.” Do you try and look for the best in people, rather than just seeing the worst? Do You appreciate what they DO do for us or just point out all their failures and faults?

How can I make others feel comfortable around me?
What do they take away from time spent with me?

They are really good questions to chew on, ponder and consider. To be aware of next time we meet someone new.

We won’t always get it right, we have all had people misunderstand us. Or heard that people felt intimidated by us. I also believe people can sometimes completely misread us as we can others.

But it’s all about our hearts. I have to think about how I am acting around others and do my best to give people a positive vibe to take away. I want to be more self aware so that I get it right.I need the humility to see things from others perspectives rather than just my own limited understanding.

I want to be understanding instead of judgemental.
I want to learn to listen better rather than ‘speak my mind’ and ‘share my opinions’ AT people.
I want to think about how I can encourage others and appreciate what they do instead of criticise what they don’t.

Most of all I want to be a person people feel good being around. I know I may not always achieve this or get it right.

 BUT I SURE CAN TRY!!

How about we try together!

It’s amazing how differently people respond when we are kind. You never know, you might just become the highlight of someones bad day and your small act of kindness may well subsequently send ripples throughout the conversations and actions of many others throughout their day.

“People will forget what you SAID, people will forget what you DID, but people WILL NEVER FORGET how you made them FEEL.”

You don’t focus on what you DON’T have you celebrate what you DO

Yesterday I watched a deeply moving and beautifully filmed advert (yes an advert!) for an American energy drink of all things. 

Adverts have certainly changed over the years. 

It’s about a top ladies basketball player from the U.S.A  called Elena Delle Donne and the intense bond that she has with her special needs sister who cannot see or hear and has various other health issues and learning difficulties. 

It is such a beautiful and moving film showing how they deeply communicate and bond through touch and other senses. 

The basketball player speaks about how the simplicity of feeling the wind against your face becomes something so profoundly beautiful when you imagine not being able to see or hear. 

It fills her sister with “pure joy.”

But there was one line in particular which touched me deeply. It spoke to me so loudly and grounded me in this difficult season I am in. 

“You don’t focus on what you don’t have, you celebrate what you do!”

Wow! 

How often do we forgot this profound yet simple truth? 

How often do we focus on everything that is wrong with our lives and then miss celebrating the wonder of what we do have?


At the moment I am in quite a lot of pain. Sometimes my spinal fluid leak seems to flare up my nerves in my head, down my spine and throughout my body. So that even when ‘lying flat’ (which normally brings great relief) my whole body just feels ‘in pain’. 

It’s not helped by the fact that I am trying to write this on my phone whilst lying flat. 

Which just seems to exacerbate it. 

And yet, when I feel inspired, when I have something to write, I just want to get it out. So that I don’t forget. So that the stirring within me is not lost and the words that are bubbling inside me don’t go flat. 

So what do those words from the advert mean to me? In this moment when pain meets a different perspective? When I have to try and see differently than how I feel?

“You don’t focus on what you don’t have, you celebrate what you do!”

There are two opposing perspectives through which I can see my life at the moment. 

The first focuses on the disability of this condition and what I DON’T have. Everything I have lost. The uncertainty of the future. The challenges of getting medical treatment. The endurance needed whilst waiting months for hospital appointments. The constant pain, fatigue and limitations. 

The second focuses on what I DO have. The blessings of a loving and supportive husband. A roof over our head and food on the table. Of my two beautiful girls being old enough to not need me to do everything for them. The fact my accident didn’t paralyse me or cause lasting serious brain damage. That I can be ‘upright’ more than I used to. That I can see and hear and get to write, listen to and watch things on the wonderful handheld computer that is my smartphone. 

Two different ways of seeing. One that can quickly lead to despair. The other that leads to gratefulness. 

Both true, both real.

And yet one can lead you to darker ways of thinking. The other to joy and bright memories. 

It is so very hard to keep perspective when you are in pain. The more you endure pain, the more strength it takes to stay positive and thankful.

Your body screams at you: 

“But this is too hard! 

I’ve had enough!

I can’t take this anymore!”

 

But your heart pulls at you whispering: 

“You can STILL love, 

You STILL have purpose, 

You WILL have better days, 

Things CAN get better.”

When I take my eyes off what I don’t have and move my gaze to what I do, it transforms my thinking. It brings light into dark places. It reminds me that although things are tough, they could be worse. 

A thankful heart is not only the greatest virtue, but the parent of all the other virtues. ~Cicero

There is a verse in the bible that says: “Be thankful in all circumstances,” -1 Thessalonians‬ ‭5:18‬‭

If your life is going well it’s easy to be thankful, but when things don’t go well gratitude is so much harder.  This bible verse can then just feel like a kick in the shins. 

“It’s alright for them with their happy, easy life (like we really know what battles others face). If I could just be fully well – THEN I will be thankful.”

And yet, I do believe there is ALWAYS something we can be thankful for. In ALL circumstances. Even when we are hurting and in pain. 

celebrate-what-you-do-1

I can remember early on in my CSF leak journey, when I still thought I had Post-Concussion Syndrome and was literally stuck lying down in a dark and quite room, I couldn’t even look at my phone screen or listen to music. One day I was feeling really fed up and self pity was knocking on my door persistently and wouldn’t leave me alone. 

I had some pistachio nuts to eat that day, the ones that you have to remove the shell. And I decided in a bid to deal with my self pity, I would think of something to be thankful for as I opened each and every nut. 

Something so simple really did change my perspective at that time. 

It’s amazing the number of things we can be thankful for when we are disciplined to remember them. 

It’s not always easy. Each and every day there is some point when my thinking can start falling into ‘woe is me with all my burdens and pain.’ Pain screams despair at you. When it’s particularly bad you wonder if you will ever make it through another day. 

And yet I do make it through those days and those dark hours. And then I stumble upon videos like the one above and the words jump into my heart reminding me: 

“You don’t focus on what you don’t have, you celebrate what you do!”

And yet again I find that I have to dig deep to find the gratitude and strength to press on and keep fighting another day. 

We then find that we are perhaps stronger than we think. Gratitude gives fuel for the fight. It grounds us in a better perspective. And reminds us that although things are not necessarily going well – there’s STILL so much to celebrate in THIS moment.

“Gratitude turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity…it makes sense of our past, brings peace for today, and creates a vision for tomorrow.” – Melody Beattie

What could you be thankful for today?

What are the things you DO have that you can celebrate? 


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.