Tag Archives: pain

Breaking Through the Darkness

Hope deferred makes the heart sick, but a dream fulfilled is a tree of life. – A Proverb‬*

Have you ever reached the end of yourself?
REALLY reached the end of yourself?
When you are depleted at every level:
Physically,
Mentally,
Spiritually,
And psychologically?

When despair sets in and a darkness envelops you that feels so strong it literally attempts to strangle any life and hope out of you?

My world came crashing down in the week running up to and over Christmas this year and I fell apart in a way I never would have thought I could or would.

You see – I am strong!
I don’t give in easily!
I have a very real and deep faith in God!
I have a healthy thought life!
I don’t do being ‘weak’ so well!

I had held on all year.

Through an immensely difficult year for our family, following a serious and unusual spinal injury (a CSF Leak) that left me with major neurological problems.

I had finally received more treatment (a second epidural blood patch) for debilitating Low Pressure Headaches caused by a suspected CSF leak, and I had to muster up all the strength I had left to be positive, overcome fear and give recovery its best go. As I wrote about in When All that Remains is Faith, Hope & Love.

I had to be strong enough. Somehow I would be strong enough. I wasn’t going to give anything else away to this horrible condition.

I wouldn’t let it take more of my life.

The problem is that sometimes life takes us to places that are quite simply beyond us. Things don’t work out how we thought they would.

We give it everything we’ve got.

And then we find we have nothing left to give.

We humbly discover that we too are one of ‘those’ people we perhaps used to look down upon.

‘Those people’ who can’t cope. ‘Those weak people‘ that can’t keep going when life gets tough.

We discover….

THAT IS ALSO ME.

And it blasts everything we once thought about ourselves out the window.

‘We’ become ‘them’.
The one battling a chronic illness.
The one who ‘broke down’ mentally.
The one who felt like escaping life was perhaps better than living it like this.

And a new journey starts.

After weeks of waiting and battling for treatment – a second epidural blood patch – everything was poised in my mind.

THIS HAD TO WORK!
I HAD TO BE WELL AGAIN!

Being a positive, faith-filled person I filled my mind with that hope. Surely after all the discussions, waiting, battles and disappointments – it would work – IT HAD TO!! Our family couldn’t go through the trauma and chaos of any more upheaval because of this horrible and unusual injury.

I finally had my blood patch and all appeared to go well – although it certainly wasn’t an instant ‘fix it all.’ So I did what I always try to do – focus on the positive, believe, step out in faith and trust that as I regained my physical strength and conditioning that I would find complete health.

I did all that I could to push through various lingering, unpleasant symptoms. Stay positive and keep going. The problem was my body and mind was exhausted and as I pushed it more and more, it began to shut down. I survived for a time on shear willpower and adrenaline but 3 weeks after my blood patch I developed acute insomnia.

I would go to bed exhausted, sleep for 30 – 60 mins, then be awake all night …..every night…. for two weeks.

No ones body can survive like that whilst also battling a major neurological condition.

But I tried to keep on going, I thought ‘if I just keep going then I will get tired enough to sleep’. Then my conditioning will get back to normal.

I just wanted to be well for Christmas to leave this difficult year behind in 2015.

Things spiraled out of control physically and mentally – my symptoms seemed all over the place – before crashing in every way.

It was Christmas.

Usually a fun-filled family time of sharing gifts and eating together.

Christmas 2015 is a blur to me. I cried my way through it, in all honesty, exhausted, depleted in every way and not even wanting to live anymore – if living meant this.

I felt so very unwell and the relief that lying flat used to provide was not alway’s there. Which is why I couldn’t sleep. It was torture. My body and mind were utterly exhausted. I didn’t know what was going on.

I assumed that the blood patch had eventually failed and because of all the battles to get it I was not sure I could access another one.

I could no longer think straight.
I could no longer see a way forward.
I lost my perspective.

I naively and ridiculously found myself ‘wishing’ that what I had was terminal – because at least there would be an end in sight, if it was. At least there would be an escape from the inner and outer pain that I felt.

PAIN CONSUMED ME.

I felt stuck between an inner pain, grief, physical pain and such exhaustion that death seemed the only way out. Yet I knew to choose death would devastate those I would leave behind. Which added to my pain.

Breaking through the darkness copy

Darkness enveloped me and pain became my reality.
Hope felt out of reach.
Faith attempted to hold on with its finger nails but was losing it’s battle.

My pride was shattered.
I was not so strong after all.
I couldn’t do it anymore.

Hope deferred makes the heart sick – A Proverb‬*

My heart was sick and I felt lost in a pit of despair that no one could lift me out of. Even my wonderful husband was struggling to reach me.

There comes a time when – however strong we are – we come face to face with the depth of our weakness.

I had never imagined I could be ‘that person’. That I could reach a place where thoughts of depression, despair and even suicide not only became real but became an obsession.

I just wanted it all to stop!!

I couldn’t do this anymore!!
I couldn’t take the chaos!!
I couldn’t take feeling so ill!!
I couldn’t face the battles of trying to convince doctors to help!!
(I actually thought me falling apart mentally would make my chances of getting help for my underlying physical condition even more problematic. I was scared that they would assume it was all ‘in my head.’).

And yet I first had to face the reality of where I was. I had been battling an injury that directly affected my brain – for a year. I had spent almost 6 months of that year in bed, lying flat almost 24/7 and the rest of the year at nothing like full capacity.

There comes a time when – however strong we are – we come face to face with the depth of our weakness.

But, I still felt like I had failed. I blamed myself.
One mistake with a ladder had cost our family so dearly.
One accident had robbed us of our future.
One moment had wrecked EVERYTHING!
I decided that I had then probably ruined my last chance of getting better by ‘blowing’ this blood patch by doing too much.

I had no ‘fight’ left in me so hopelessness washed in like a flood.

EVERYTHING BECAME DARK.

I couldn’t see past the darkness. Attempts to battle negative thoughts whilst being physically so depleted and unwell seemed fruitless.

I JUST WANTED TO ESCAPE.

I convinced myself that my family would be better off without the burden of such a debilitated, chronically-ill wife and mother.

The pain of thoughts of dying came face to face with the pain of thoughts of living.

I DESPAIRED OF LIFE ITSELF

“Courage isn’t having strength to go on – it’s going on when you don’t have strength.” -Napoleon Bonaparte

BUT……. IN THE MIDST OF THE DARKNESS LOVE BROKE THROUGH!

All was not lost.

Love reached out to me and helped me to hold on.
Grace was still there waiting to be rediscovered.
I had to open my eyes again to see that the light of love was still burning in the darkness.

Family and friends simply loved and supported me. They helped me to rediscover a better perspective. My 8 year old daughter used to come and sit on my bed and with all the passion she could muster she would tell me how much she loved me and that she wouldn’t want any other Mummy but me – even when I am so unwell.

A new journey began.
It was not easy.
It has been painful.
It has been hard.
It has been confusing.

I have wrestled with myself.
Wrestled with my identity.
Wrestled with my faith.
Wrestled with the darkness.
Wrestled with various neurological symptoms.
Wrestled with how to move forward.

It has been a very confusing time symptoms-wise. After the new year things began to improve. Some things were still like low pressure headaches. Some felt different. It was hard to know what was going on in my body, brain and mind. Doctors were not always sure either.

I had to discover the strength each day to put one foot in front of the other to just get through intact. To pull through the pieces of a broken life and somehow find hope again.

“Honesty & steadfast faith – especially in the darkness – forms a powerful & enriching message for everyone in pain….. Sincerity and humility are essential.”Samuel Chand

Darkness had enveloped me at a time when I felt like I couldn’t find God any more. Hope returned as I discovered He was there with me all the time.

I just couldn’t ‘perceive’ Him.

I had to rediscover God’s love and grace. Learn to ‘let go’ of the life I had lived and choose to trust and hope that I could recover and that there was something better ahead. I had to battle the fear and anxiety that tried to persuade me that I would never be free. I had to learn to get comfortable with stillness, quietness and to embrace true peace and rest on a deeper level.

I had to learn to perceive God’s voice in a new way and hold onto the truths spoken over me.

Breaking through the darkness quote copy

I have had to rediscover who I am in its simplest form and be OK with a more simple life for a time.

A new depth of humility helped me to see that I had sometimes  judged others ‘weakness’ because I didn’t understand them. I have now developed a deeper empathy and compassion for others facing challenges and struggles; especially those linked to chronic and mental illness.

I have had to discover a new kind of strength that is actually born out of weakness.

It’s been an immensely difficult journey and one that it has taken me a while to write about. For a long time I felt like I had lost my voice and had very little to say that could help others.

And yet.

I know that as we talk about our deepest weaknesses and vulnerabilities, others can connect with us and know that they are not alone. It then gives our own pain more purpose because our story can bring a ray of light in the midst of another’s darkness.

“We may impress people by our strengths; but we connect with them through our vulnerabilities.” – Nicky Gumbel

It can be invaluable to know that someone else is also struggling and that your journey can help them too. We can then navigate the stormy seasons in our lives TOGETHER and some how help one another to weather the storm.

Albeit wounded.
Yet stronger.
With a new perspective.
More appreciation of life.
And a deeper empathy for others.

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.” – Haruki Murakami



Please do feel free to comment below. To read more about my initial injury and journey with a CSF leak/ Low pressure headaches you can see these posts.

*Proverbs 13:12 from The Bible

UPDATE March 2018: It is now looking likely that after epidural blood patches I may well have experienced some rebound high pressure symptoms. This is a very confusing condition, that can be a severe complication of epidural blood patching/ CSF leak treatment. Here is my more in depth post about experiencing this after my 4th EBP in September 2017.


 

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.

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 Hospital.

Nine Months On: My Ongoing Journey Of Overcoming A Spinal CSF Leak. 

“Courage isn’t having strength to go on, it’s going on when you don’t have strength.” – Napoleon Bonaparte

Each of us has a story. Our life stories are unique to us. Lives, circumstances and even illness and injury are not often ‘text book’. 

We are all individuals and our lives and bodies are complex. 

I want to continue to share my own story, in the hope it might help you on your journey and also hopefully educate people about some of the complexities of these conditions.

I have chosen to write the post specifically with CSF leak and post concussion sufferers in mind. Which is why it is longer than my normal posts.

Over the months I have read about other peoples stories.

Some of them tie into my own experiences. 

Some don’t. 

So I wanted to add my own story to those out there. Maybe you will relate to it. Maybe not. But I hope that it helps you regardless.

“Facing pain may require more courage than we’ve ever had in our lives.” – Samuel Chand

We all have days and times in our lives when we don’t want to get up in the morning. When life is busy, stressful and hard work. Times that you crave to be able to stay in bed all day read a book, watch TV or listen to music.

Then you get ill or injured and, for a time, staying in bed all day becomes your reality.

And it is far from easy. 

If you have seen any of my previous blog posts you will know I fell off a ladder 9 months ago and sustained a concussion (mild traumatic brain injury) and was later diagnosed with post-concussion then 8/9 weeks later, a CSF Leak (Cerebral Spinal Fluid Leak). Which we assume is somewhere in my spine.

At the moment I am lying flat in bed writing this. I have spoken about lying flat in many of my blog posts, but what does this actually mean? 

I mean my upper body and particularly my head has to be flat on the bed or sofa. Sometimes I can use a very thin pillow to support my head. Often even that lifts my head too high, so I tend to spend most of the day, and sleep, without a pillow. I can be on my back, side or even front.

But my head must be as flat as possible

When I was in hospital, both times, It would intrigue me that so many very ill people are propped up in bed with pillows and their beds raised up.

That concept is unthinkable for me at the moment. In fact the reality is that would just be a form of torture. It seems alien to me to be unwell and sitting propped up. 


I have a routine now where I drink lying flat (even cups of tea) using straws. I eat all my meals and snacks (apart from dinner) lying flat. (I just eat dinner extra fast so I can lie down again quickly). 

My first time in hospital the pain had got so unbearable that my husband would feed me dinner, so I could lie flat, because that is the only way I could manage the symptoms and the pain.

Nine months later, following a relapse, I have learnt to manage it a lot better. The main way to do this is just to avoid being upright for more time than absolutely necessary. Five or ten minutes is normally manageable. Beyond that is often unbearable.

You have no choice but to lie down because it reaches the point you literally just can’t function upright. 

So I currently try to only get up when absolutely necessary.

When I lie flat I am almost symptom free. I say almost, because I still can feel weak and dizzy and get some aches and pains. 

But lying flat I generally feel more like me: 
I can write,
I can talk,
I can think.
I feel more normal! 

Sitting or standing at the moment is a whole other issue. You would not believe how you can go from feeling mainly symptom free to feeling really very ill in a matter of minutes or even sometimes seconds of being upright.

Since I was diagnosed with a CSF Leak, I have caused the doctors and Neurologists a lot of confusion because my full set of symptoms are not fully in line with their normal experience of a CSF leak. 

Most doctors experience of CSF leaks are mainly from epidurals that have gone wrong or lumbar punctures (LP’s/ Spinal Taps) where the hole in the spinal dura won’t close. Also people can obviously get cranial/ skull leaks from trauma, which can be seen through spinal fluid dripping out your ear or nose. These can be (but not always) easier to diagnose and often easier to treat.

Spinal leaks, whether spontaneous or through trauma (as in my case), often cannot be easily seen or proven. Which makes diagnosis and treatment problematic.

Mine also seems to be connected to the original post-concussion diagnosis. Which tends to confuse doctors because I often present at A&E with symptoms that are more in line with post-concussion syndrome/ post traumatic migraine.

The telling sign that there is probably a CSF leak, in the mix, is that I have the postural element of the injury. I am generally symptom free lying flat, but symptoms build when upright. If I am upright for too long the symptoms will also extend to lying down for a while after, but they always dramatically improve. 

This has lead the Neurologists to conclude that they think I probably have a CSF leak that exacerbates post-concussion migraine symptoms. I will try and explain this to you further in the hope that it might help other people with similar issues.

A couple of weeks ago I was admitted to hospital following an almost total relapse of symptoms. There are a few things that were slightly better than last time I was admitted 6 months ago, but generally it’s the same thing. I think perhaps part of the difference now is that I know how to manage the injury better than I did before. 

Here were my symptoms I was admitted with (in no particular order). 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Dizziness,
Balance issues,
Walking difficulties,
Speaking difficulties, including slurring of words and inability to fully express myself.
Drunk like behaviour.
Pressure in the head.
Neck stiffness & pain.
Pain at the lower back of my head.
Photophobia (light sensitivity)
Shaking and spasms.

These are actually almost the same symptoms I had every time I visited A&E since my injury (4 in all). The third visit I was in such acute pain in my head/ neck that they tried to give me morphine, which rather than take the pain away, made it worse and made me very sick so they decided to admit me for a brain MRI scan.

It was only through this first admission that I finally got to see a Neurologist who raised the possibility of a CSF leak due to the postural nature of my symptoms.

The consultant looked into two possible diagnoses: Post traumatic migraine from the concussion or a CSF leak.

Neurology then set about to investigate the CSF diagnosis which proved more problematic than we would have hoped.

If you read up on CSF leaks you will soon discover that diagnosis can be immensely difficult.

Unless you have recently had a lumbar puncture/ spinal tap, an epidural or spinal surgery and then present with postural headaches. Proving you have a leak and finding it can be a bit like looking for a needle in a haystack.

They firstly did an MRI brain with contrast which came back clear of Intracranial Hypotension or ‘brain sag/slump’. This is the condition that low CSF causes. Basically, because there is less fluid round your brain, your brain then falls in your skull, due to gravity, when you are upright. The pain and symptoms are due to the pressure this puts on this area of your head and the stretching/ squashing that occurs.

It is not unheard of for these scans to come back clear. And from what I have read, severity of symptoms do not necessarily correspond to these scan results.

So they attempted to find a leak site in my neck via MRI. This also came back normal. Which is again not unusual.

The leaks are often minute. Most imaging, even MRI, is not powerful enough to locate them. 

They then did a lumbar puncture/spinal tap to look at opening pressure. Mine was a 7. They said they would consider it to be low if it was 8 or lower. Worse cases of CSF leak are often a 3 or below. (Normal is about 10-20).

So that supported the diagnosis but it was not a definitive diagnosis. 

When they did the LP I knew it was the same sensation I felt. However, following the LP I had an additional headache which was even worse, again postural, and all my other symptoms increased too:

Head pressure,
Neck pain,
Dizziness,
Instability walking etc.
My back also hurt a lot at the site of the LP. 

These restored back to what they were before the LP a couple of days later.

I then had an MRI of my spine which came back clear. 

The neurologists then decided to try a high volume blind epidural blood patch. Which is used to treat spinal CSF leaks when they can’t locate the leak site.

Usually if you have had an LP or an Epidural they know where the leak is so they can inject the blood patch into the same location in the lower epidural space in the spine. This is supposed to help seal the leak through the blood clotting and generally increase the spinal fluid pressure. These procedures have a high success rate. 

It wasn’t easy for them to agree to get an anaesthetist to do a blind patch at first, because of the higher risks involved and lack of evidence to back up the diagnosis. Blind blood patches are a lot less effective than ones directed at the actual leak location. 

The problem is we think, it is possible, that my leak might be in the upper or even cervical (neck) spine. To do a blood patch higher up the spine is very high risk because of the lack of space between the vertebra to reach the epidural space and because of the proximity to the brain.  

Eventually a team of anaesthetists agreed to do a blind blood patch and they took me down to surgery to do it. I think they managed to inject 30ml of my blood, taken from my arm, into the epidural space in my lower spine. 

The consultant anaesthetist then advised not to do a second blood patch, even if symptoms did not improve. When people have blood patches following an LP or epidural CSF leak, relief can often be quite instant. They will also often do a second or even third blood patch if the first one fails. In my case they were concerned about doing another high volume patch without further investigation. 

I laid flat on my back for about 15 hours after mine, without moving, to help it to ‘take’.

When I was able to get up some things had improved, some things hadn’t. 

I had the choice whether to be discharged or stay at hospital to pursue more investigations and treatment (which was not a simple route). I chose to go home (having been there 18 days) and work on my recovery and hope and trust that things would improve.

And things did improve, a lot.    Within a few days I was back on my feet. I could walk on my own again outside, I could drive short distances. I didn’t have as much problem with head pressure and pain.

But it was still there. 

I always put this down to the fact I had had a brain injury (concussion) prior to this and had been in bed for 3 months.

Surely things would just take time. 

Symptoms improved gradually and I thankfully pretty much got back to normality.

But I still suffered with head pressure, head pain, spaced out symptoms, dizziness, back pain (from the blood patch) and neck pain.

I still found I could not get through a whole day without lying down flat. Life became about pacing myself. Staying positive and believing that things would keep improving. 

Then I relapsed. 

Perhaps I did too much.
Perhaps I took too many risks.
Perhaps it happened regardless of what I did.  

Over the period of about 2/3 weeks things got progressively worse. I had to lie down flat more and more during the day to cope and compensate.

I went back to the GP, got a referral back to Neurology (which I would have to wait for an appointment for). Tried lying down for most of two days to see if that helped.

Then symptoms got overwhelming and we headed back to A&E for the fourth time this year. As I talk about in ‘Learning Patience’. 

The thing that again confused the Neurologists was why did I always present with symptoms more in line with post-concussion syndrome/ post -traumatic migraine BUT the symptoms are obviously very postural.

Why did I not just present with an unbearable postural headache, as in ‘normal cases’?

I understood this dilemma myself because when I read about symptoms. Most people would talk about unbearable headaches, and even though I experienced headaches, they were not always fully in line with others descriptions.

In fact, other people’s descriptions were probably more in line with the additional headache I experienced during the couple of days after the LP. That headache was more distinctly a headache as well as increasing all my other current symptoms.

What I tend to experience is nothing like I had ever felt before. 

I will try and explain the sensation I experience at its worst

I sit up, almost instantly my head begins to cloud over and the pressure builds, that makes me feel dizzy and unstable on my feet. Each minute of standing this increases. It feels a bit like you have been whacked round the back of your head by a heavy object.

What feels like a stiffness in the upper neck then increases followed by what moves from an ache to an increasing pain at the bottom back of my skull.

After a bit it can feel almost like I am being strangled, from the back of my head. I can also feel a pressure behind my sinuses, it can make me cough and gag, the front of my neck gets tense. I struggle to think, can struggle with my words, increasingly struggle to walk without support and then if I am up too long I can end up twitching/ shaking and having small spasms.

You become consumed by doing what has to be done as quickly as possible and getting back to lying flat. I feel very irritable and shaky because I just physically and mentally cannot cope with being upright.

The longer you are upright, the worse it gets and the longer it takes to recover lying down. Once back lying flat it often can take a few minutes to recover from what can only be described as the trauma of being upright. (Occasionally it takes longer to recover). 

The doctors always ask me ‘do you have a headache’? or ‘how is the headache’? But to me it’s not simply a headache.

It’s not just about a crazy ‘pain in my head’ it is more than that. It’s an intensity that is unrelenting and sets off various other symptoms. Pain is one of those but not necessarily the over riding symptom. 

The overriding unbearable symptom is intense unrelenting and increasing pressure in my head that makes doing anything immensely difficult. Until I reach a point my body and mental processing cannot cope with it anymore and it begins to react accordingly by shutting down.
I just cannot function properly sitting or standing. 

It is a headache, I guess, but nothing like headaches I ever had before my injury. I often feel the pain more in my upper neck than head.  Previously, the very occasional headaches I had were always at the top front of my head and were completely different. There is no comparison. I think it’s perhaps more migrane like but I never had a migrane so I don’t really know.

Headaches are unpleasant. You lie down and they are still there. You take painkillers to get rid of them. (I have occasionally had a normal headache in addition since my injury – they don’t go away lying down). 

These so called ‘headaches’ feel like you are being tortured. My body literally cannot handle being upright. Which is why when I have to sit up to travel to and wait in A&E waiting rooms, my symptoms always increase and I act like a drunk person. I cannot physically or cognitively cope with the strain put on my brain.

When eventually I get to lie down (usually before I see an A&E consultant) I am suddenly not quite as bad. Which is probably one of the reasons the first two times I was discharged as just having post-concussion syndrome.

We didn’t understand the relevance of posture at that time. 

When I finally was admitted. I still didn’t fully understand the need to be fully flat. My bed was often at first a little raised. I used large pillows. I sat up to drink drinks, eat, get changed, use the bathroom, speak to people.

I now realise that is why the pain built up to be unbearable. I have learnt not to do that any more. Which means I have generally learnt to manage the pain, without medication.

As long as I lie flat pretty much for 24 hours a day. 

It’s a part positive of the condition – I get relief from the torture. 

But you obviously can’t live a normal life like that. 

“When we face life challenges, we must find a way not only to survive them, but in time, to actually grow from them. We must find a way to keep on keeping on, no matter how hard or painful life becomes. As a result, we can avoid getting “stuck” and live life in spite of our circumstances.” – Kelli Horn

After a few days in hospital, after my relapse, they agreed to try another blind blood patch. Which was again the subject of great debate between the Neurologists themselves and the Anaesthetists (especially because they had initially advised only doing one). 

So that is what I am currently waiting for. They said I could have it as an ‘outpatient’ so I get to wait at home rather than hospital. (One blood patch was already cancelled though because of lack of theatre time available and then a subsequent recovery bed). 

Blind Epidural blood patches usually have a 50% success rate. Being a person of faith in God and optimism I am choosing to believe it will work and again get me back on my feet.

It did last time. We are trusting it will again. But this time we are praying that it fully heals and will never come back.

You don’t realise how precious a normal life is till it is snatched away from you. 

“All the world is full of suffering. It is also full of overcoming.” – Helen Keller

I have and am learning a lot and developed more compassion towards others with long term health issues. Compassion means ‘to suffer together’. There is a beautiful thing that can happen if we allow our own suffering to develop our compassion towards others.

Humanity becomes more unified, gracious and loving as I wrote in ‘We Are All Messed Up’.

If you suffer with post-concussion or a CSF leak I hope that you find a way through, discover the strength you will need and that you will find doctors who understand and can help you.

Having a unusual injury or illness is hard, but let’s choose to keep holding on to hope for the future. Encouraging one another and hoping that doctors become more knowledgable and understanding of this debilitating condition.

There is always hope, there is always progress being made. Life may be hard but there is always something we can do and achieve.  

Even amidst the pain. 

“Your past mistakes, hurts & pain can help give someone else a future. Whatever we have gone through enables us to help others.” – Christine Cain


I would love to hear about your stories and experiences with concussion, post-concussion and CSF Leaks? Please do comment below. You never know you might help someone else in the process.

For more of my posts on this subject please see my first post here. You can see my ongoing series of posts by clicking on the CSF Leak and Concussion menu at the top of the page. 

To read more about my ongoing 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.

We Are All Messed Up!

Do you ever wonder:
If other people are like you?
What their ‘real’ lives are like?
Who are they really behind that mask or behind those closed doors?

Do others really struggle like you do?

Over the years I have learnt that people are more similar than we might think. Although our lives and challenges are, in many ways, unique.

We ALL have struggles.

Life brings all of us both joy and pain.

Even those people who might want you to think that they have it all together. The ones who seem like life always goes well for them – the beautiful couple down the road and the perfect family next door.

Yes; they struggle too.

Their challenges will be unique to them and you will often never know they exist.

But I assure you – they are there.

“Be kind, for everyone you meet is fighting a hard battle.” – Plato

from darkness

Over the years I have had the privilege to connect and build relationships with people from all different backgrounds and cultures, both here (in the UK) and abroad.

I love people. I love discovering who they really are and then helping them to reach out towards fulfilling their potential.

One of the things I have learnt is that although the world is full of diversity, which is wonderful, we are ALL actually more similar than we might think. Things are different outwardly for us all and yet inside we often face the same challenges, temptations and battles.

I recently watched an episode of a series called ‘The Tribe’ on Channel 4 about a native family living in rural Ethiopia.

It was fascinating.

Obviously their lives were completely different from ours. They lived in mud huts, kept animals, were self sufficient, had arranged marriages and yet as you watched it and listened to the translation you realised that families face a lot of the same issues.

Fear,
Worry,
Anger,
Insecurity,
Struggles,
Pain,
Rebellion (yes teenagers in rural Ethiopia like to push the boundaries of tradition and etiquette just like Western kids do).

In the episode I saw, one of the teenage girls used to love going to the market in the town to look at & buy new items of clothing. On this one occasion she ran off with some of her family’s money to go and buy colourful bras (even though the traditional dress was that women usually went topless). The argument that took place upon her return was so similar to arguments in many teen homes in the West!

We are ALL more similar than you might think.

FullSizeRender

There is a song by Lecrae, featuring Kari Jobe that really spoke to me following its release a while ago. It is all about the fact that we are ALL broken, messed up and in need of grace.

“Broken pieces actin’ like we ain’t cracked,
But we all messed up and can’t no one escape that…
… Ain’t a soul on the planet
That’s better than another
And we all need grace in the face of each other” – Lecrae

I love this concept.

We are ALL messed up in some way and in need of grace (undeserved kindness, understanding and forgiveness).  

Grasping this stops us believing there is a hierarchy of ‘goodness’. That some of us are just ‘good people’ and some of us simply ‘bad’.

The revelation that people are more similar to you than you think, is actually empowering because it makes us all more equal. It demands that we treat one another with grace rather than judging one another with faulty or hypocritical principles.

When we can accept that we ALL have weakness, vulnerability and struggles; our selfishness is challenged and we can actually become more compassionate.

It changes our pride into humility.

We stop rating ourselves as better or worse than others but instead recognise that we are all ‘messed up’, in some way, and in need of grace.

It levels the playing field.

As I wrote in Surviving the Storm Six months on, I have been faced with my own frailty and weaknesses this year, possibly far more than any other year.

This year has challenged my identity and chipped away at my confidence. Physical weakness can also challenge us mentally and emotionally.

You have less energy for life.

However,

I am learning that I need to embrace this process rather than fight it.

We must allow our own struggles to build in us authenticity and a deeper compassion and grace for others.

It’s a painful process.
It’s a humbling process.
But it’s also a beautiful process if we let it run its course.

In A Year Ago Today: A Journey Through Grief (about my Mum’s death) I wrote:

“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.”

Suffering causes different things to happen to different people: Some people can become hard and bitter, consumed by their own pain and need. Others learn to direct their pain into compassion and empathy for others.

It is these people that find new purpose within their suffering. They have other people to think about and focus on which helps to heal their own wounds.

It changes our perspective.

Self pity; destroys us. It makes us miserable and angry.
Compassion; fills us with positive passion. It moves us to see others needs and make a difference in their lives.

Feeling compassion, for others, in the midst of our own struggles, brokenness and pain, builds bridges that helps us to identify with all sorts of other people.

from darkness

We are ALL messed up in some way.
We ALL have flaws.
We ALL get stuff wrong.
We ALL make mistakes.

Most of the time we will never know what has happened in someone’s life to make them like they are.

We ALL have a story;
Things that shape us.
Things that break us.
Things that heal us.
Things that strengthen us.

We are ALL more similar than we think and; “We all need grace in the face of each other.”

“It’s incredibly powerful- life changing- to be in a relationship where we can be totally vulnerable without fear, when the person knows the worst about us and still accepts us.” -Samuel Chand

Who could you show grace and compassion to today?

Life is not meant to be easy!

Life is a gift.
A wonderful privilege.
Full of adventure, love & happiness.
Life brings both wonder and excitement.

But,

Life is not easy.
It is challenging.
It often feels hard.

Hard work.
Hard relationships.
Hard choices.

Of course many of us recognise that some people have had a ‘harder life’ than others. (Which helps us keep a balanced perspective).

However,

We are also very aware of the challenges we ALL face.


Be kind, for everyone you meet is fighting a hard battle – Plato


Do you often feel that life is hard?
Harder than you thought it would or should be?

Perhaps?
Definitely?
Always?
Sometimes?

Why is it that?

white paper blanks on rope

I’ve been thinking a lot about this lately and it has caused me to think through a number of questions:

Is life actually meant to be hard or are we getting a raw deal?
Do other people find life as hard as you do?
Do you hope that life will get easier someday?

Sometimes I think we have believed a lie that life is supposed to be EASY.

That it is easy for some.

Easy for them.

In the West, we are sold that lie every day. Adverts, films, books, magazines and social media, all feed the ideal of a better, happier and more comfortable life.

But do things and comfort actually make you happy?

white paper blanks on rope

I often say to my husband that the media often sell us the lie about the ‘perfect family life’.

The good looking Mum and Dad have an awesome, romantic, yet down to earth marriage. They work hard, but also have lots of time to invest in their beautiful children. They have plenty of money, a stunning home, car, clothes and go on amazing holidays.

Life looks easy!

Does that not sound attractive?

But in reality family life is often anything but ideal.

FAMILY – is often hard work!

In many ways I have what might seem an ‘ideal’ family life. Matt and I have a great marriage. We have to work at it, like everyone else, but we managed to set a firm foundation from the start which has provided great stability in our home.

We have two healthy, beautiful, kind, loving and intelligent girls who flourish at school, are creative and full of life.

And yet we, like many others, find that in reality family life is often exhausting.
Parenting is tough.
Directing selfish kids is a challenge.

We can dream of consistent ‘family bliss’ but I am not sure that it really exists.


FAMILY – is often hard work!


Our kids regularly fight, argue, push against boundaries, complain and challenge us until we are tempted to run away and hide under a rock for a while – until things get easier.

Often ‘quality family time’ is far from wonderful. In fact sometimes it feels like something we all have to endure rather than thrive on. (Especially when you have small children)

I actually started writing this post on holiday. The ‘prime’ of quality family time. Supposedly a time of fun, laughter, love and relaxation.

….And although there is truth in that (we have had some wonderful times together)…

In reality even holidays don’t stop the responsibilities of being parents and the kids squabbling & complaining.

So what do we do?
Do we just give up on family life?

No!

We know we have to push through the hard times so that we can then appreciate the wonder and beauty of family.

To keep on keeping on!

No one really lives the fairy tale ideal anyway!

leadership pain

I have just finished reading a fantastic book called ‘Leadership Pain’ by Samuel Chand. It was both refreshing and insightful to read him, and so many others, acknowledging the ‘pain’ that is unique to leaders. Whilst encouraging us to keep on growing, which means constantly raising the threshold of our pain.

Often people can look at leaders around them and assume they must have life all figured out. That they enjoy their ‘power’ and ‘bask’ in the limelight.

This is rarely the truth.

Of course people can pursue and abuse power and hide their true selves.

But true leadership is often more challenging than many of us imagined. In the same way that the responsibility of leading/ parenting our children is.

Leadership, like parenting, is often hard. It is often painful. You have to make many sacrifices. You will get hurt.

You are leading real people. Helping them to grow and develop. You have to have courage to lead the way, even when you haven’t been there before yourself. Even when people don’t get you or your decisions and push against your authority.

Samuel Chand writes,

“There is no growth without change, no change without loss and no loss without pain. If you are not hurting, you are not leading. Your vision for the future has to be big enough to propel you to face the heartaches and struggles you find along the way.”

Leadership and parenting are inherently HARD. So you have to have a vision for the future that keeps you going through the tough times.

You must believe that your current investment, as a parent and leader, is worth while. You need hope for your child’s future, hope that many of the people you lead, will grow, develop and move forward. That is where you ultimately find joy and satisfaction.

It all comes down to perspective. Without the right perspective we can get drowned by the hard times and lost in the pain.

white paper blanks on rope

Life, in its essence is often NOT easy and the sooner we get our heads round that, the sooner we can prepare our minds to face the challenges life brings.

Responsibility
Hard work
Pain
Suffering
Rejection
Perseverance

Are all a fact of life.


Life, in its essence is often NOT easy and the sooner we get our heads round that, the sooner we can prepare our minds to face the challenges life brings.


We all have dreams for the future but they will usually not fall into our laps. Instead, we must face the fact that often WE have to make the right choices and keep on making the right choices for things to work out.

We have to CHOOSE the longer and harder road to experience longer term satisfaction.

We have to invest in our lives early on, making the necessary sacrifices along the way.

People want love without sacrifice.
But that does not exist.
Love and sacrifice are coexistent.
That is why we find family life and relationships hard.

Leadership is the same. Great leaders are not driven by selfish ambition. They are driven by a desire to serve others. To do this, great leaders love their followers.

And if:
LOVE = SACRIFICE.

Great leaders, like great parents, sacrifice for those they lead.

Sacrifice in its essence is hard.
Which means true love is hard.

Life was never meant to be easy. Life is an adventure. Adventures are in their essence challenging. But they are also so exciting.

We cannot experience the joys of life without embracing it’s challenges. It is the hard times which help us appreciate the good times.

It’s all about perspective.


You will never understand pleasure without pain. – T D Jakes


Do you find life hard?
How do you find strength to face it?

Surviving the Storm Six Months On: My battle with Concussion & a CSF leak

This post is a follow up post to Surviving The Storm: My Battle With Concussion And A CSF Leak that I wrote 3 months ago.


Life is a journey through different seasons. Seasons of celebration, happiness and success and seasons of loss, pain and frustration.

Sometimes unexpected things happen and life changes in an instant. Sometimes that change is temporary. Sometimes permanent. But it always brings a season of adjustment with it.

At the start of 2015 my life was going along normally. It was the start of a new year; a new season; a new time.

Then I had an accident.

In many ways, it was just a small accident. In an error of judgement I put a small step ladder on an uneven surface whilst painting. I painted with it there for hours, then in one moment the ladder toppled over and I fell.

One mistake on my part. And one I have paid for over the past six months.

We all make mistakes every day. Often the consequences are minimal. Then a day comes when we make a mistake that has bigger consequences.

We can’t change what happened.
We can only learn from our mistakes.

That journey is never easy.

When I fell, I hit my head, back, neck and arm. It was a blunt but forceful impact to my lower head and although I felt the impact and felt slightly dazed, in general I actually felt OK.

So I did what I always do: I got up and carried on.

I even joked to others about falling off that ladder – oblivious to what had actually taken place.

Then as I wrote in Surviving the Storm, over the next week my injury caught up with me and everything began to unravel.

Grunge Background

Brain injuries like concussion, post concussion and CSF leaks are tough. They are difficult to fully diagnose and yet so debilitating. Your brain is like mission control to your whole body and when your brain gets rattled or strained so many things get out of sync.

I am one of the blessed people whose injury, although serious, was comparatively mild. Severe brain injuries are life threatening and permanently life transforming. I am so very thankful that it was no worse.

However,

It was and still is a storm in my life. It was debilitating. It changed my life for a time. It is still improving but it has not yet fully passed.

Four or five months ago, at its worst, the only way to ease the symptoms was to lie flat and do nothing. For hours, days and weeks on end.

Have you ever tried that?

Doing nothing but lying flat in a dark room.

It can be torture. Especially when you are dizzy and in pain.

I was then finally admitted to hospital 8 weeks after the initial injury. Although tough in itself, I was thankful for this, because we got some answers and I was finally diagnosed with a CSF leak (cerebral spinal fluid leak).

Many people will not know that after a few days in hospital I faced one of the darkest days in my life.

Some events took place that probably during an average day I would have coped with and managed mentally and emotionally a lot better than I did.

But on that day a pattern of events unfolded that involved a senior hospital staff member with an exceptionally bad attitude.

And it totally floored me.

I have never felt so utterly weak and helpless. I was in so much pain, was mentally impaired by the cloudiness and dizziness, and faced a very unpleasant situation that I was powerless to deal with.

Those two days (because things got worse before they got better) were probably two of the the hardest days of my life, in many ways.

I have never felt so desperate, so weak, so intimidated and so vulnerable.

I cried a lot that day, desperately and deeply (in a hospital ward full of other people).

Have you ever come to the end of yourself?
When you have no strength left physically or mentally.
When you feel desperately vulnerable.
When you can’t fight any more.
When you don’t know what to do.

At its worst my injury left me in severe pain and my body would start shaking violently in response. As this happened my mind would cloud over and take me into a drunk-like state.

You can’t think straight, struggle to talk, can hardly stand and walk, and it can be quite distressing.

You feel immensely vulnerable and it was in my vulnerability that I faced this intimidating situation that I couldn’t deal with alone.

In that moment I thank God so much for people who loved and cared for me. There was a wonderful nurse at the hospital who reached out to me in my desperation with compassion and understanding. My church family had already dedicated a week to praying for me and they fought for me spiritually in my dark hour.

My husband was at a pre-planned family gathering with my girls that day (over 2 hours away). It was to celebrate my Mum’s birthday, in her remembrance (just over a year after her death). He dropped everything to leave, earlier than planned, and got to me as soon as he could (about 3 hours later).

In my darkest hour I was physically and mentally wrecked and alone, and yet I did the one thing I could: I reached out to God in the midst of my desperation. 

I knew that He would carry me.

When there was nothing left of me I knew He would hold me.

When I felt the most vulnerable I had ever felt, I knew I had advocate who was fighting for me.

And that is what got me through. Believing, hoping and trusting that things would get better.


I have never felt so desperate, so weak and so vulnerable.


CSF leaks can be very hard to fix. There is still a lot of uncertainly about the best ways to treat them. After two and a half weeks in hospital I ended up having a blood patch (where blood is injected into the epidural space in your spine) which helped a lot, but it certainly didn’t solve everything.

I again had to decide to hold onto my hope and have faith that it would get better. And things have got better. A sense of normality returned, but even 6 months on life post-injury is still a challenge in many ways.

I still can’t do everything I once did.

And that is hard.

As I shared in ‘Is Busyness a Choice?‘ I was a busy person. One of those people that always had a lot on and did a lot of rushing about.

But at the moment I still can’t rush about like I used to.

And it is SO frustrating.

I still have to sit and lie down at regular intervals. Especially when I have a lot on.

I often feel lightheaded, my head gets cloudy and a spaced out.

Life takes much more effort. Which is a mental, as well as a physical challenge for me.

I am a doer, a get up and get on type of person, but my body won’t always let me do that at the moment.

When your energy levels are low, everything becomes so much more difficult. The things you have to do become that much harder. And even your mental processing becomes impaired. These are all things that I still have to battle through daily.

I have to have wisdom to work out my days. If I know I have a lot to do I need to make sure I have clear rest points in the day, both before and after the activities I need to do.

It is manageable.
But it is frustrating.

And yet despite all these challenges I have learnt and grown so much.

I have so much more empathy and awareness of people with health issues. I hardly ever used to get ill, so my experience of battling this has given me more compassion for people who are struggling with injury and illness.

I have had to develop a longer term perspective so as not to get overwhelmed with the daily challenges. I have to see the bigger picture. 

I have had to learn to say no to doing too much, allow other people to help me, and tell people when I am struggling. Which doesn’t come easy to me because I fight against self pity at all costs and do not enjoy being a victim.

Life has been more frustrating.
I have faced increased feelings of discouragement.
But I have certainly become more self aware and developed more humility.

The last six months have been tough in many ways.
However,
I believe we can never give up or lose hope.

Without hope we have nothing to live for. It is always faith, hope and love that give us confidence for the future.

I have faced my own vulnerabilities and weaknesses like never before. And more than ever I know I cannot rely on my own strength to keep going and do all I am meant to do.

But that is not a bad thing.

Coming face to face with your own weaknesses and vulnerability can be a good thing.

In the Bible God said this to the Apostle Paul when he was struggling with his own weaknesses:

“My grace is sufficient for you, for my power is made perfect in weakness.”

Paul then wrote in response:

“That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” 2 Corinthians 12:9-11.

When I feel weak, I realise that I can’t ‘do life’ on my own. I realise that I don’t have the capacity and strength alone to face the challenges that life brings. But I do know God will work His power in and through me…. regardless.

That is grace.

The Almighty God uses us fragile humans in our weakness and vulnerability and makes us strong in His power.

When I come to the end of myself I have no where else to turn but God. It is then that God’s power works in and through me in the most beautiful way.

Because when you come face to face with your fragility you understand that we are all the same.

We are all human.
We all have struggles.

It is then, as God shows us His love and grace in the midst of our own struggles, that we can show love and grace to others in the midst of their struggles.

That is the power that works within us.
The power of love and the power of grace.

It is the mystery of God.
The divine paradox.

That weakness brings strength.
And that strength is spelt LOVE.

And love and grace are all you need!

So that’s my journey of surviving my unique storm. It is still not over, but writing this post has been helpful for me in looking back over the past six months, remembering, learning and growing towards the future.

This post has, in all honesty, been written through tears as I attempt to share some of the darker realities and vulnerabilities of my journey.

However, what I do know is that these dark days are not without purpose. They have been used to strengthen me and they will be used to help others.

There is always new strength to be found in weakness. Sometimes the journey to finding it will be painful.

But it is always there to be found.


How do you find strength in weakness?


Comments are always welcome below or on my social media links. 

You can read the first post about my injury here. I have also since added a new 8 month recovery post. I then go on to write about my ongoing story of relapse at 9 months and on to rebounding into High Pressure CSF at the end of the year all these posts can be viewed under the CSF Leak and Concussion menu choice at the top of the screen. 

To read more about my ongoing 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.

This post was inspired by my last post called ‘Breaking Free! From Pretense’.

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.