Surviving the Storm: My Battle With Concussion & A CSF Leak.

‘The longer I live the more I realise the impact of attitude on my life. Attitude to me is more important than failures or successes, than what people think, say or do, it is more important than appearance, giftedness or skill. The remarkable thing is that I have a choice everyday as to the attitude I will embrace and I am convinced that life is 10% of what happens to me and 90% how I react to it.’  – Charles Swindoll

It’s been a while since I wrote on this blog. In fact, only a few days after I started the blog, I had (what I considered at the time) a little accident and fell off a step ladder and hit my head, neck, & spine as well as sustaining some other minor bruises.

The end result of this little fall was two and a half months of, at times, severe symptoms which were diagnosed by various medical professionals, firstly as Concussion, then Post-Concussion Syndrome & Whiplash and finally, about 3 weeks ago, I was diagnosed in hospital by neurologists as having a spinal CSF (Cerebral Spinal Fluid) Leak. (This is a tear in the membrane that surrounds your brain and spinal cord. It results in the spinal fluid leaking out and absorbed into your body, reducing pressure and causing your brain to drop in your skull.)

I am not sure we really fully know which of my symptoms could be attributed to what diagnosis, at what point. However, in the end, the CSF leak seemed to fit many ongoing symptoms, a lumbar puncture confirmed ‘low pressure’ spinal fluid and I received treatment for this which helped a lot. (This included an epidural blood patch following over 2 weeks of lying flat in hospital whilst taking caffeine supplements & pain relief).

In short I had battled for weeks with an array of symptoms which included:
Severe dizziness
Lack of balance
Pressure headaches
Severe head and neck pain
Cognitive (thinking) impairment
Sensitivity to light and noise
Nausea
Body shaking and spasms
Struggling to walk very far (and only with support)
Struggling to talk at times
A constant need to lie down flat to alleviate/ ease symptoms. (typical of a spinal CFS leak).
Exhaustion of body & mind

Over the last 11 weeks I saw multiple NHS doctors & consultants, nurses, physios, had 3 trips to A&E, one ambulance to the house, a two and a half weeks stay in an NHS neurology ward, a CT scan, X-rays, 3 MRI scans, (all inconclusive) 1 lumbar puncture and 1 epidural blood patch.

I am currently still on the journey of recovery and building up my strength. Not fully back to normal and still have to lie down at times during the day, especially in the evenings, but I am so much better than I was.

It’s certainly been a challenging 11 weeks which totally disrupted my, and my family’s, normality. I spent 22-23 hours a day, for the first couple of months, lying in bed in a dark room, mostly on my own, doing very little and then two and a half weeks in hospital lying flat as much as possible whilst I waited for various tests and procedures.

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After starting my blog in January, the third blog post I wrote was about Perspective: Stepping Back From The Detail To See The Bigger Picture. I wrote about how our perspective is really important and how we sometimes we need to step back from the details to see the bigger picture. I spoke about how sometimes it’s not circumstances that need to change but the way we see what is happening. Sometimes we have to choose to see things differently, we have to see with new eyes.

Who could have known that the words that I wrote at that time could be so significant for me in the days, weeks, and even months after I wrote them. Sometimes it’s our own words that become powerful in speaking back to us. The words we say or write in one season of our life becomes so applicable to another season of our life, in a new way.

So over the past few weeks I’ve learnt a lot about perspective. Many hours, of many days, I’ve had to step back from the detail to see the bigger picture. I have had to step back from the symptoms to get a larger perspective.

Some days you have to fight for a better perspective.
Sometimes you have to push your way through the details to gain a better understanding.
Sometimes you have to step back from the circumstances and choose to change your attitude.

Especially when things can be:
Scary
Unknown
Different
Exceedingly frustrating
Exhausting

When you can feel:
Very unwell
Naive
Helpless
Weak
Uninformed
Mentally impaired

When the new season requires new:
Patience
Endurance
Wisdom
Strength
Faith
Determination

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The past number of weeks again opened my eyes to new perspective. I can’t recall in my life ever being ill for more than a few days. I’ve never had a brain injury before and I really didn’t know a lot about them. I now have a much better understanding, and a better perspective of people who experience them and similar things.

The challenge of mild traumatic brain injuries, is that they are often unseen. They are not a visible injury. Concussions, whiplash, and often CSF leaks, don’t appear on normal CT or MRI scans so it creates problems in diagnosis, all you have is the symptoms to go on.

It’s a humbling process as you try and work your way through the symptoms, often having to rely on the information you seek out yourself, to work out what on earth is wrong with you and how to get the right treatment. It’s a challenge when you are diagnosed with something that people don’t know a lot about. When your illness or injury is not fully tangible, yet so debilitating, and can often only be diagnosed by the symptoms that you experience and have to try and communicate to medical professionals.

So it’s been a season of learning.

Challenge and hardship are often a place we grow, a place we learn, a place we develop. If we choose to approach them in the right way and with the right perspective.

The Bible NLT Translation, James‬ ‭1‬:‭2-4. You can experience joy through challenging times because you know that it is stretching your ability to endure.
The Bible NLT Translation, James‬ ‭1‬:‭2-4. You can experience joy through challenging times because you know that it is stretching your ability to endure.

Sometimes:
We just have to be patient.
We have to keep walking through the storm and trust the calm will come.
We have to face the challenges of life and then use what we learn to make us stronger and help other people.
We have to keep holding on to hope without knowing all the answers.
We have to fight to stay thankful and see the positives within a difficult time.

It’s all about having the right perspective.

It’s not easy.

Some days you have to fight through the frustration, the fear, the worry and the negative thoughts. Until you can again see with a better, more positive and hopeful perspective and step back from the details of your circumstances.

When I stepped back from the detail in my situation, I could see that it could have been worse. Yes this accident interrupted my life, yes it was frustrating, a real challenge. It totally changed my life for a number of weeks and months. However, I had so much wonderful help and support from my family and friends. I have learnt so much and gained a better perspective and more appreciation of life. And I am now coming through my storm, I am doing well in recovery and I am getting back to some kind of normality day by day.

There is never any point in wasting energy on the ‘why me?’ or ‘what ifs?’ A negative mindset, looking backwards or forwards, just destroys you from the inside out. Even amidst very difficult times there’s always something to be thankful for and others worse off than you. I always chose to believe that my storm would pass (even when I seemed to be getting worse rather than better), others don’t have that blessing, the storm just gets worse and doesn’t go away.


Some days you have to fight through the frustration, the fear, the worry and the negative thoughts. Until you can again see with a better, more positive and hopeful perspective.


So again, with new insight, I say that so much is linked to perspective. We can choose to see the positives or become consumed by the negatives in our lives. We can choose remain thankful for the good things, even when we are going through a dark time.

Often it’s not the circumstances of our lives that need to change. It’s our perspective, it’s our attitude, it’s the way we ‘see’ and think about our life.

Sometimes we need to step back from the detail to see the bigger picture. We then realise that often the storms in life come and go. And with the right attitude and a hopeful perspective we will come through it:
a little stronger,
a little wiser,
a little more thankful for daily life,
and have a little more compassion for others.

It’s all about perspective!

I am convinced that life is 10% of what happens to me and 90% how I react to it.’ – Charles Swindoll

Lets keep asking ourselves: What parts of our own lives could we see with a more positive perspective? Self awareness is always the first step to personal change.


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

I have now written two update posts about my recovery journey at 6 months and at 8 months; I then have a series of posts about a relapse at 9 months  when it was decided that I probably never had a concussion and all my symptoms could be attributed to a spinal CSF Leak

To read more about my 20 months on story of living with a chronic spinal CSF Leak click here

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

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

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

To find out more about Concussion and Post Concussion this video is a great resource: Concussion Management

 This is a wonderful new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 5 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.

This other in depth 2018 medical paper is about both low and high intracranial pressure syndromes and their similar and different symptoms. It also mentions cross overs with other headache types. When a patient suffers with a spinal CSF leak long term it can cause massive fluctuations in their whole pressure system both whilst suffering from a spinal CSF leak and following treatment. This is why lumbar puncture pressure readings and ICP pressure monitoring can prove an inaccurate disgnostic tool for SIH as this paper refers to as does the 10 myths paper. My initial LP reading was a 7 which was considered ‘evidence’ of low pressure by some doctors and normal by others.


A Year Ago Today: A journey through grief and what I have learnt.

A year ago today we sat in an ICU relatives room being told that today was the day that they would turn off my Mum’s life support.

Those few days were a tough and exhausting journey.

In November 2013 we discovered that she had a brain tumour. On January 8th 2014 the doctors operated on it. The operation was complex and took 14 hours. In their eyes it was a success. However, the next 48 hours proved fatal as it emerged that she also had an infection in her pacemaker that caused septicemia, and this combined with the brain surgery overwhelmed her already fragile body.

Those few days opened my eyes.

This was my first experience of ICU. There were critically ill people everywhere. Attached to machines keeping them alive. Many of whom would recover and yet many of whom would not make it or at least only ‘make it’ through to a life dramatically different from their previous one.

Mothers,
Fathers,
Sons,
Daughters,
Sisters,
Brothers,
Friends,
Lovers,
Husbands,
Wives.

And the waiting room was full of people waiting for them. But unlike most waiting, it was often waiting to see whether a loved one would live or die. Waiting to see what that life-changing injury, illness or surgery would do. What it would look like within their family. To say goodbye or to welcome someone back. And even if they came back, their life may be radically changed.

And in that room it was different. A different perspective. An unsaid understanding that people were fighting a battle. That people were riding a storm.

Waiting.
Hoping.
Loving.
Holding on.
Surviving.

When you left that room and went out into the wider hospital or world outside, it was different. Staff at work. People visiting patients. A coming and going of life and normality….for some.

But our experience was far from normal.

There was a part of me thankful to have been there and seen it. To be there and remember & realise that while we go through our ‘normal’ lives, others are facing turmoil, crisis & pain. Sometimes it’s hidden away behind a door titled ICU in the middle of a hospital. Sometimes it’s in a hospice down the road. Sometimes in a house next door. Sometimes it’s hidden in the lives of those you work with, walk past, sit next to on the bus. The shop assistant, the teacher, the security guard, the single mum.
 
People are hurting even though you may not know.

wolken

We lost my Mum a year ago. A year ago I experienced my first real experience of personal grief, along with all the questions and thoughts that go through your mind.

“No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid.” – C.S. Lewis

For the first few days & even weeks after it happened, I felt an anxiety & what was like a ‘fear’ I hadn’t felt before. The above quote from C.S. Lewis resonated with me. It’s a feeling like anxiety and fear and yet you are not actually afraid. A heaviness. A pain within. A pressure that builds up inside you and you don’t know what to do with it. The thought of going out and seeing people you know can be hard. A ‘fear’ grips you. An anxiety I had not felt before.

And yet…

I chose to push through, to fight, knowing that I couldn’t let those feelings debilitate me. I had to push through, to break through. To discover purpose through pain. To face the questions. To let go of guilt & embrace the way forward. The way out. The way that sees good triumph over evil. The way that does not allow death to destroy.

I have learnt that the best way in life is not denial.
It is to face challenges head on.
Knowing that you will get battered through the journey.
But knowing that taking a battering and coming through stronger is better than allowing yourself to be destroyed inside due to denial.

So that is the journey I have walked. A journey that turns difficult things into challenges that make you stronger and wiser. A journey of self-awareness. A journey that helps you to feel more empathy & compassion for others. And a journey that becomes part of your identity, but that does not define who you become.

Some great words that someone sent me at the time that really helped.

So, one year on, I sit here and I remember the pain. I remember the exhaustion. I remember those days in hospital where my loving God was my only strength & the source of the deep peace I felt throughout. When words from the Bible, music & other inspiration carried me and become an anchor that held me tight.

I remember the relief when my husband, Matt, was able to come to London a day after my Mum died. I remember the drive back to Leicester in the car: utterly spent, physically & emotionally exhausted and yet finally being able to share with my husband the full journey of the last few days.

I remember when I got home. The desperate need to find a photo of my Mum looking healthy, so as to replace the image of someone who hardly looked human lying in that hospital bed. Grotesquely swollen from head to foot. Covered in wires.

I remember the pain, the questions & things to work through in my mind. The tears. The memories. The exhaustion of sleep lost, of pushing through.

But here we are a year on.
Today marks the anniversary of that day.

I have learnt that each person deals with and faces grief differently. There are few rights and wrongs. I have always felt grief was much easier for me than some. Partly, because I lived over 3 hours away from my parents. Our lives were no longer as intermingled as they were as I was growing up. I did not have to look daily at the empty chair. I was not reminded hourly, daily of the person lost. And perhaps because my relationship with her was quite complex anyway and had been for a long time. (Although that brings its own challenges into the grieving process).

And yet I know that what gets me through this, and all the things we face, is an ability to see the positive amidst the negative. A training of the mind to face challenges head on & to learn and grow through them. An inner strength that comes from my deep relationship with God. An innate gratefulness that there are always blessings, hope & joys in life to be found – even amidst the pain of death.

While we were in the ICU waiting room there was a couple waiting for their 20 year old son to wake up. He had been in an accident & was in a coma. They didn’t know if he would wake at all.

They waited,
ate,
slept,
and washed,
in that hospital waiting room.

They had been there about 10 days. They didn’t want to leave in case he woke up and they were not there.

On that Friday afternoon my family sat with my Mum as they turned off her life-support. An agonising time which seems to go on forever as the heart continues to beat for a good few minutes after the breathing has stopped. And the heart rate goes up and down until finally, agonisingly slowly, dropping to zero.

It was horrible.

I tried to put music on my phone and hold it to my ear to drown out the beeps of the heart monitor that lie to you that a person who is gone is still there.

However, as we left the ICU that day for the final time, I saw that couple we hardly knew still waiting for their son to wake. We had shared a connection. We had shared the pain of watching a loved one in the throes of death. And as I looked up at that mother she immediately knew what had happened.

That anxious mother, who did not know if her son would live or die, responded like this:

She held me.

In that significant moment, someone I hardly knew hugged me.
With a touch that I needed.
A touch that understood and felt the pain.

And I whispered to her, with all the strength I could muster “I really do hope things are different for you.” She replied with deep gratitude and briefly shared how touched she was for someone to say that in the midst of their own pain.

I will never know what happened to that family. But I do hope things went well for them.

Never let your pain define you.
Never become so consumed with yourself that you cannot feel another’s pain.
Instead allow your heart to become tender.
Allow yourself to reach out to others amidst your own struggles & vulnerabilities.

Everyone you meet is facing some kind of battle. Some are having to fight harder than others at that moment.

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

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

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

So let’s choose to journey through life with compassion and care. Understanding that we are not dissimilar. We do not need to fight one another. Instead we can support one another and choose to ‘hold’ one another even in the midst of our own pain.


Suffering can, if we let it, unite and draw us together in a way that nothing else can. It strips us of our titles and crafted exteriors and touches the heart.


Perspective: Stepping back from the detail to see the bigger picture

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

Yesterday I was painting a mural on a wall at a local school. In the evening I was talking to my husband Matt and I was saying that because the picture is so big, as you are designing and painting it on the wall, you have to keep stepping back to get a better perspective. When you are next to the wall, drawing or painting, you lack the ability to see the bigger picture. You can’t quite see if something is straight or big enough or if it fits together ok with the rest. So you have to keep stepping back to take it all in and see how everything is fitting together.

It’s all about perspective:
When you are close to the details you can’t see the bigger picture.

Perspective is so important in life.
Perspective often dictates our response to situations.
Perspective is often limited to our view of the details in front of us.

For instance, if I have a critical or negative perspective about something or someone, I will tend to see everything from that perspective. Even if something good happens or the person does something good, I will often not see it, because I will only see what was wrong. Unfortunately, I will also communicate to others from that perspective, meaning that they too are now being influenced by my limited negative and critical perspective.

On the other side of the spectrum, when you love someone you should have the opposite perspective. (We often use the old ‘rose tinted glasses’ saying to describe seeing things from a rosy perspective when we are overly positive or especially when we are in love!) When you love someone you see them and what they do through different eyes. You demonstrate compassion and understanding. You choose to see more from their perspective rather than just your own. Because love is primarily about sacrificing your selfishness for another. Which means thinking less of yourself and more about them.

So perspective matters.

So much of what we do is connected to our attitude and perspective. How we choose to ‘see’ affects so much of what we do.

I may not be able to change the world I see around me, but I can change the way I see the world within me. -John Maxwell

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Sometimes we can become so consumed with our day to day lives, struggles and priorities that we can lose the bigger picture. We are so focused on ourselves and what we need to do that we become blinded to the challenges that others face, which in turn means we can lack empathy and understanding.

Sometimes we need to take a step back and see the bigger picture. Sometimes we need to look around us and choose to ‘see’ with a larger and more understanding perspective. Sometimes we need to see with ‘new eyes.’

New eyes of:
Gratitude
Compassion
Love
Generosity
Kindness
Forgiveness
Renewed hope, purpose & vision.

Often it’s not until a traumatic change takes place in our lives that we really ‘value’ the normality of our everyday lives. It’s not until we lose something or somebody that we realise that we maybe valued the wrong things. It’s all linked to perspective.

However… we don’t need to wait until something bad happens to us or someone close to us to change our perspective. We can choose to do it now. Sometimes we do not need a major change in our lives. Instead we have to choose to see things differently. Sometimes we need to see life and the people who surround us with ‘new eyes’. Maybe we need to open our eyes to a new way of thinking and a new way of relating to the world.

It’s then we realise that our problem was not really the circumstances of our lives but was instead our limited perspective and view of it.

What will our lives look like if we choose to ‘open our eyes’ to a new perspective?

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

Who am I…. Really? Embracing our uniqueness in a world full of labels.

Who am I? Why am I here? What is all this about? What’s the point of life? What difference can I make? What defines me?

Whoever you are. Whatever you do. I am sure you have faced those questions. Sometimes they knock at our minds when we face those rare moments when there is no noise around us. Sometimes they mould and define us as we carve out our place in this world. Some of us never truly discover the answers.

Many of us are defined by the titles and boxes of what we do: I am a parent, I am a nurse, I am a teacher, an IT consultant, a cleaner, a banker, a student, an employee, a manager, a boss, a leader. Often that is all the world around us wants to know ‘What do you do?’ As if by knowing what you do it can quickly sum up ‘Who you are’ and more importantly ‘how significant or important’ you are.

But that is only part of the story.

As John Maxwell says: “In our culture, people ask, “what do you do?” not, “who are you?” or “How are you making a difference?”. Most people place too much emphasis on titles and position instead of on impact.”

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So some of us look to personality types: I am an introvert, an extrovert, a thinker, a doer, an explorer, realist, creative, pioneer….

All these things help us to explain who we are and help other people to understand us more. But these things can also place us in boxes that we can’t escape from. Boxes that are only half the story. (I always find myself in the middle of a few, struggling to pin point labels that actually make sense of who I really am.)

What if we were less caught up by trying to be ‘defined’ by positions, titles and labels and more caught up in discovering and embracing our own uniqueness. Instead of allowing ourselves to be dictated by the boxes we are placed in, and place ourselves into, what if we gave ourselves and others the space to find out who we really are and who we are meant to be.

Losing stereotypes.
Looking beyond titles.
Seeing the real person rather than just their position.
Speaking about people as individuals, rather than grouping them together under headings that supposedly define them.
Allowing people to break free from their past and the labels that have been attached to them.


What if we were less caught up by trying to be ‘defined’ by position, titles and labels and more caught up in discovering and embracing our own uniqueness.


These questions have defined a lot of my life. My life’s journey has often battled the quest for labels and titles that ‘define me’. Names that I can hold up as badges to explain who I am and gain credibility & others approval, in a world where people love to feel ‘important’. And while I have, at times, desired those badges, they often seem to have eluded me. (Which has, at times, been a challenging journey and a personal battle I have had to face.)

But I have learnt that until I stop trying to be defined by ‘titles’ or ‘positions’, I will not push through to discover who I am really meant to be. Until I give up the need to explain to others who I really am and instead just BE who I am, I will not allow others room to be who they really are, regardless of their labels, titles or positions.

So I choose to believe that it is not ‘how important’ we sound that defines us. It is not the boxes of labels, titles and positions, whether self-imposed or imposed on us by others, that dictate who we really are.

We are who we are.
An individual.
A one-off.
With a unique past, present and future.
Not to be tied down by one definition.
Not to be defined by someone else’s words or phrases.


Until I give up the need to explain to others who I really am and instead just BE who I am, I will not allow others room to be who they really are


I wonder what life would be like if we all stepped back from the badges, titles, positions and labels that have defined us all for too long. And instead sought to be real and honest with ourselves.

Seeking to discover the:
Gifts,
Talents,
Idiosyncrasies,
Uniqueness
That we all have.

And just get comfortable in our own skin.

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Pressing on…..Regardless. My journey to starting a blog in 2015.

It’s a new year. A new day. A new season. What will it bring? What changes will evolve or be thrust upon us this year? What new challenges will we face? And what new adventures shall we embrace?

At the start of 2015 I have decided to put to paper (or I should say screen) what I have felt for a while in my heart. I am going to start to write. Everyone who knows me well knows that I love words. This is because I believe that words are powerful.

Words have the power…
to uplift,
encourage,
inspire,
motivate,
and touch people deeply.

Words can also….
take away,
hurt,
damage,
control
and wound people deeply.

Words, whether used rightly or wrongly, are powerful. So at the start of 2015 I have decided to start writing. This year that ‘writing’ begins in this blog.

I have been considering doing this for a couple of years. But when I have thought it through I have usually dismissed the idea asking:

Who am I to write?
Who wants to listen to what I have to say?
What am I going to write about?
What if no one reads it?
What is the point of writing if not to be read and heard?

However, then as we approached 2015 I felt that prodding again in my heart. To PRESS ON REGARDLESS!

writing

Regardless of:
Who wants to listen.
The impact quantified.
The applause given.
The approval gained.

Because none of that is important. (It feels important at the time but the importance gained is only temporal). When your heart says write. You should write. When God says write, you should listen, and respond…… Regardless!

Because life is not about:
The approval gained.
The applause given.
The impact quantified.
Who wants to listen.

It is about following the still small voice in your heart that knows you better than you know yourself. The one who knows the future panned out for you. Who created you for a purpose. The author of life. And the architect of words.

So in 2015 I choose to write. And primarily I write for an audience of one. Because that is what is right. Because that is all that really matters.

And yet….
If anyone else is inspired, encouraged or challenged by these words. Let it be so. I write because this is who I am. I write because this is who I was created to be. And in 2015 my resolution is to write.

Regardless of the ifs and buts.
Regardless of the results.

So today, I invite you & others to join me on this personal journey of courage (it is taking a lot of that) as I explore life with words, thoughts and observations. As I attempt to somehow convey some of the complexities, perceptions, questions & thoughts that fly around my mind.

I do still hope that some of you might connect with the words. Be inspired. Be encouraged. And maybe at times even challenged.

And if I do look for a response – let it be this: That you will also find the courage to pursue what is impressed upon your own hearts. Regardless of the ‘results’.

writing

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.