Recently I have thought a lot about our shared humanity. The fact that we are ALL equal humans.
One is not above the other. We are all the same.
We all have strengths and weaknesses, we all have hurts and joys, we are all somewhat fragile – never fully knowing what our tomorrow will look like or what the years to come might bring.
We are all the same. And yet we are all utterly unique.
There is only one of you and there is only one of me. And yet, however different we are, we also share so much that is similar. Wherever we go in the world – there are people who are similar to us. In that we share a common humanity.
One of the great joys of my life is getting to know people from backgrounds and cultures that are very different from my own. I have had the wonderful opportunity to meet and become friends with such a wide and varied spectrum of people from all over the world. And ironically the more diverse the people I meet – the more I see the common threads of our humanity. I love to celebrate and learn from the differences. But most of all I love to see how much we are all the same underneath.
Over the past few years I have especially discovered how brokenness and weakness has the potential to help us to see our equal humanity. Experiencing more of our own human inadequacy can bring much more humility – which helps to crush any sense of superiority. Superiority and judgement are probably the biggest barriers to us connecting with others and embracing our shared humanity.
“Humility is about coming to grips with our humanity… Pride is a determination to be seen as bigger than we are. When we are humble, we are down to earth. No energy is wasted on pretension. A humble man can be taken at face value.”– Erwin McManus
However, it’s not just superiority that’s the problem – often both a sense of superiority AND inferiority can bring a feeling of ‘separateness’ and ‘individuality’. Both feeling above and beneath people separates us from others because both cause us to focus on ourselves more and how much better or worse we are than other people. Which can stop us truly SEEING others and can cause us to miss what is going on in their lives.
As I have so vividly learnt over recent years, it is often suffering that is the equaliser. In my own experience suffering tends to somewhat level the playing field. When we are hit – face on – with our human vulnerability and fragility we soon start to see how we and humanity as a whole is prone to such brokenness. It doesn’t matter how well you are educated, how many letters you have after your name, what titles you have collected or how much money you have.
As humans we will all face times of suffering. And those seasons of suffering tend to remind us of who we are…
Fragile humans trying our best to live this life full of unknowns the best we can.
“Suffering invites us to be radically human with one another, perhaps doing nothing more than reaching across the table, clasping hands, and weeping together. We are afforded the chance to create a safe place for someone else to mourn…” – Jen Hatmaker
It is true, in my own life experience and observations, that it is often suffering that ‘invites us to be radically human with one another.’ It strips us of all our titles, labels and achievements and touches the heart. The rich get sick and die and the poor get sick and die. One might have the money to make that journey of suffering a bit less painful. But both the rich and poor still have to walk the painful journey that suffering brings.
It is thus, often through suffering, that we discover a potential for more authentic connection with others. Suffering can strip us of our ability to ‘hide’ from others. Especially when our suffering is obvious and effects our everyday life. Suffering can expose us – but if we can embrace the vulnerability that the exposure brings, then we have the potential to discover more human connection in that place.
IF we are willing to live in the discomfort of being more fully known.
“The strongest relationships are formed in heat of difficulty and the confession of weakness…. sometimes we feel like we have to present a perfect image to the world that everything is OK because we have faith. But in reality honesty breads more honesty… it’s about sharing our common humanity”– Patrick Regan
It is true that honesty breads more honesty. When I talk openly to others about my many physical and mental health battles over the past few years since falling off a ladder in 2015 and experiencing a long term debilitating spinal/ brain injury, I find that others are more willing to open up about their own physical and mental health battles. When you are honest about your own battles with anxiety, depression and suicidal thoughts – others will often open up to you about their’s as well. Sometimes people who you never even knew struggled with such things, will reveal more of the dark depths of their own similar wrestling’s. Sometimes they have never really told anyone before. It brings more common understanding and empathy. And it is in that safe place of empathy that you discover more connection.
Human connection is most beautifully seen and experienced when we open up our lives and become increasingly REAL and honest with others. When we allow ourselves to be more fully known.
So I would like to invite us all today to choose to be more ‘fully seen’ to remember that we are ‘all the same’. We are neither superior or inferior to others. Your background, titles, labels, achievements, failures or weaknesses do not make you any more or any less human than the next.
Equal humans trying to find our way through our crazy lives. So as the saying goes…
‘Be kind. Because everyone you meet is fighting a battle that you know nothing about’.
Everyone experiences suffering – if it’s not you today – then it might be you tomorrow. So let’s embrace our common humanity. And we might just be able to help to make our broken world a better place for us all to live. Regardless of what comes our way.
“Time is not really spent. Instead, it is invested in a future we cannot see.” – Alicia Britt Chloe
When I read this quote recently in Alicia’s book ‘Anonymous’ it resonated with my perspective on life. Our time on this earth should not simply be ‘spent’ and should certainly not be ‘wasted’. Instead, all of our time is an investment for a future we cannot yet see – whether it’s intentional ‘learning or doing’, time invested in family and relationships, or facing a set of circumstances which force us to use our time in a new or unforeseen way.
If we can see like this, then we can know that nothing needs to be wasted. Everywhere our life takes us – both the good and bad – is an opportunity to learn, grow and invest into who we are becoming. It’s also an investment into who those we parent, lead and influence are becoming.
All life’s circumstances are opportunities to invest in the future – whether it’s ours, or others around us.
The pathway of recovery, after a long term spinal fluid leak, is often a long, arduous and immensely slow process – even after successful treatment.
The wonderful news is that – a year on from my successful 4th blind lumbar (40ml) epidural blood patch (EBP) – I am doing comparatively well. I have been upright all day every day since mid December 2017 (some days recently that is from 4am – 11pm!! If I happen to wake up early and have to get up due to ‘lying down’ headaches).
I can walk for miles, happily drive locally, get a lot done at home and look after my children (now 11 & 13). I can cook & bake for our family and others, spend quality time with people, go on holiday, and invest increasing time in my life-calling of pastoring and helping hurting people, in and through our local church. This is currently mainly through a lot of one-to-one mentoring and personal development time with others, as well as teaching in small group settings. I also do bits of admin for our church. Thankfully this is all flexible and I can do what I can, when I can, without any added pressures.
I have so very much to be abundantly grateful for. Last year I was acutely unwell and utterly debilitated – initially by the spinal fluid leak, then subsequently by severe post-treatment rebound high pressure symptoms. For four months over the summer of 2017 I had to lie down flat nearly all day, every day, and could only manage an exhausting 10-30mins upright at a time. Then after my EBP I just had a pretty much constant debilitating non-positional headache – amidst many other symptoms (as I talk about in this post) – for months. It is hard to explain how extremely unwell you are with both those conditions, and how confusing it is to work out which is which after treatment.
They are both truly awful to endure!
The road to full healing, even after successful treatment, is not an easy one at all. After a while, you can see that you are making some progress – albeit slow – in moving up the mountainside from the darkness of the valley below. But even the mountain climb of recovery is utterly exhausting in so many ways. It continues to take so much endurance, patience and resilience to scale the never ending rocky slopes.
But I am getting there….
In the light of how ill I was for so long – I am doing exceedingly well! I haven’t been this well since my accident in January 2015. In the light of how healthy and busy I was before my accident – and the onset of the leak – I am still not fully well. But I’m increasingly heading in the right direction.
How ‘well’ I am now is all a matter of perspective. I have to keep focusing on the wonder of how far I have come and the fact that I can easily be upright all day, which is a small miracle to me. So I must embrace all I can do – which is comparatively a lot – and not resent or get frustrated with what I can’t!
The slowness of my recovery can certainly feel frustrating at times – to say the least. Who doesn’t want to get back to full health and be able to embrace more of the life they once knew? And yet I’ve begun to learn and see more of the wisdom that can be found in the slowness. It’s not just my body that needs to heal physically – I (and my whole family) have needed to heal holistically, in so many different areas.
Having lived with a chronic debilitating neurological illness for years, and then experiencing the slow process of holistic recovery, I believe in some ways the whole journey through illness, healing and recovery can be viewed in a similar way to grief. It’s a journey, a passage, we walk through. It’s not something we experience one day, then ‘get over’ it the next. It lives with us as we attempt to move forward with our life. We have to wholeheartedly face, embrace, and walk through what we discover on the journey of sickness and healing – whether traumatic, painful or beautiful. We must give it the time and attention needed to move ‘through’ it, as well as we can, and find more lasting healing in every way.
My mind, emotions, memories, and soul need healing just as much as my physical body. They have needed to find increasing restoration, fresh confidence and new freedom.
You can’t ‘rush’ holistic healing!
It’s a process of working through complex and traumatic memories, emotions and thoughts. Unless you’ve walked the spinal CSF leak road, or a similar long term debilitating illness, you may not understand the trauma involved at every stage. Simply the daily holistic trauma of living with the illness itself is enough. When ‘leaking’, simply being ‘upright’ is often utterly traumatic for our bodies, brains and minds. Then add in the trauma of trying to seek medical help and support for a condition that very few doctors really understand (IF you can get diagnosed and ‘believed’ – that is). And add to that the mental and emotional trauma of being so debilitated and unable to function, anything like normally, in the short and long term. With this combination you can see that there is a lot to work through – as I write about in one of my most widely read posts, Living With a Spinal CSF Leak.
Sometimes it’s not until you start getting well that you actually realise how exceedingly unwell you truly were for so long. This is traumatic in its own way. The fear of going back there again can be overwhelmingly crippling – especially in light of how long recovery takes. This isn’t helped when, like in my own case, multiple major relapses have been your very real past experience. Moving on from the fear of relapsing again is so very difficult. True freedom from this fear can only come slowly, as your confidence builds with the longer you go without getting worse again. These fears can also leave us completely confused and unsure of what we should allow our body to do or not do.
On a purely physical level, I have also discovered that, after years of leaking spinal fluid from your spine, your whole nervous, and intracranial pressure, system seems to be completely messed up!! Over the months and years of leaking I have become hypersensitive to even the smallest pressure changes in my head and spine. These physical ailments added immensely to the struggle to cope with even small amounts of stress and anxiety whilst leaking and during recovery. This is due to stress and anxiety naturally affecting intracranial pressure anyway, meaning that the physical, mental and emotional become even more intrinsically linked. Even more so because any heightened emotion, especially crying and laughing (or raising your voice in excitement, passion or anger), are brutal on our already hypersensitive heads.
I found the only way to try and deal with all this was by learning to stay as calm, peaceful and quiet as possible. (I already experienced this from leaking – as can be read in this article). This means we have to avoid stressful and anxiety inducing situations when we can – whilst ‘leaking’ and especially in the early months of recovery – which is not easy when we are trying to holistically manage and recover from a debilitating illness, still have to deal with medical professionals and hospitals, and have a family and home to look after (at the very least). It would be even harder if I had had to try and go back to any of a massive spectrum of jobs and careers which do not allow an abundance of time for calm and quiet individual activity. I cannot ‘multi-task’ anything like I used to be able to. Such things are still often way too overwhelming for my current cognitive capacity – although still obviously improving. Even now I also still struggle to ‘rush about’, especially in ‘busy’ or ‘bustling’ environments (even more so if I have to talk to and interact with others as well) so I have to try and maintain more order and calm throughout my life than most people.
Initially, even simply doing more ‘normal’ things again – like going to shops or being in an environment with lots of people – can induce anxiety. As it would for anyone recovering from a long term, previously debilitating, medical (especially a neurological condition). However, this then perpetuates itself because we are already so hypersensitive and thus prone to such things. These environments are already ‘taxing’ on our ‘foggy’ heads because of all the overload of mental stimulation. But having to interact with people and talk a lot can also soon leave our heads even more full of pressure and thus struggling to concentrate and cognitively process what is happening and how we need to respond. So we have to be careful about how much we subject our heads to.
This unfortunately meant I often found myself ‘avoiding people’ at times – especially for the first few months of recovery. This was truly heartbreaking for me because I really do love people and like to talk to them about their lives. But talking, for even short periods of time, would simply make my head worse. Although this has very much improved overtime, my head getting worse from simply talking can still regularly be an issue.
The other key problem with our recovery is that to improve our physical conditioning we have to exercise. But exercise involves exertion, which is another trigger for the higher pressure hypersensitivity. So again it’s a vicious cycle. After the first awful couple of months post-treatment when I still couldn’t walk far at all, I subsequently found that gentle, and initially slow, walking often helped my head more than trying to rest lying down or reclined. Since early December ‘17, I decided to keep my body upright all day and quickly increased the amount I walked up to an average of 3-5 miles a day over 2-4 separate walks. The walks started off very slowly – but my pace slowly increased as my head and spine improved. Long walks – alone – also gave me, and still give me, the much needed space to calm and relax my body and mind, as well as improve any anxiety and my general conditioning. Walking is also very liberating after the many months over the past few years I couldn’t really leave the house.
I did discover that walking was much easier on my head if I walked quietly (or normally listening to something uplifting, inspiring and calming on my smartphone) on my own. Due to the increased breath use – walking and talking at the same time are more of a challenge. I can walk much further more easily on my own than with others. Similarly, I can also get more done at home when I am not required to talk at the same time. Moving about a lot and talking (especially more loudly) can be a bad combination for my head. Although this slowly gets better over time.
Other ongoing physical symptoms include varying head pressure often felt mostly in the lower forehead and especially around and behind the eyes when worse. (When particularly bad it can feel like your eyes might burst out of your head). But I can also feel pressure in the occipital region (bottom of skull/ top of spine) and down the spine (especially in the lower lumbar spine). But it’s a slightly different sensation to ‘low pressure’ (leaking) occipital/ neck ‘pulling’ headache. Although harder to differentiate in the early days of recovery.
The main difference that slowly becomes clearer (after much initial confusion) with this ‘higher pressure’ type of pain is – rather than increasingly getting worse throughout the day (or even over a short period of time being upright) – like it did when obviously leaking, it tends to instead come and go at various points in the day according to what is setting off the ‘hypersensitivity’ at that time. Even now, it can still get worse until my head feels full, my ears crackle and pop and sometimes it makes me yawn a lot and feel rather sleepy – especially due to the pressure behind and around the eyes. It can also make me feel slightly shaky, rather detached from the real world, my vision can get slightly blurry, my cognitive processing gets a bit more sluggish, I can occasionally feel a bit nauseous (in the early weeks after my EBP it could often make me physically gag) and my heart can beat noticeably faster. Hence adding to an ‘anxious’ feeling. But this normally gets better again if I spend some time staying upright but being quiet, calm, keeping my spine straighter and move about more gently and slowly. If it gets too bad – often a quiet walk or sitting quietly for a bit helps.
The other main difference to ‘low pressure headaches’ is that it doesn’t get better lying down– although lying down may still rest your body somewhat – hence the confusion. I never lie down in the day anymore because it tends to make my head worse. However, all of these kind of reactions mentioned above are slowly getting less acute or intense and much more manageable as recovery improves.
Waking up in the mornings can also still be problematic at times because of the lying down. I still often (most days) have increasing headaches around and behind my eyes and in my lower forehead, and can sometimes feel slightly nauseous soon after I wake up (this is especially prominent if I try and stay in bed too long once awake). Unlike when ‘leaking’ – I subsequently find that I must get up once I have been awake a little while – whatever time it is. I am known to get up anytime from between 3:30am-8:30am depending on the day and when I happen to wake up (unless the 6:30am alarm on school days wakes me first). Once I do get up the main headache goes away quite quickly these days – although my head and spine can remain feeling strangely ‘full’ but without obvious pain. (In the initial weeks after my blood patch, the headache wouldn’t always ease much getting up – at least at first. I think the exertion of getting up and interacting/ talking with my family would complicate it and I could often feel very unwell and often feel sick and gag from trying to ‘do things’. So then I would then try and lie down again to be still and quiet – but would end up still feeling very ill and then simply continue to physically gag from the nausea and increasing pain from lying down (which simply adds to the exertion headache – perpetuating everything). It’s tormentingly confusing and very hard to get relief in any position in the early days of recovery. Medication (initally acatezolomide, then after 2 months a switch to nortriptyline, in my case) can help some of the underlying problem or pain. But not necessarily the hypersensitive reactions to changes in intracranial pressure. Which is why it is so utterly confusing and brutal on your mental health – which adds to the anxiety we are already prone to – as I write about here in my 6 month post patch update).
Bending my neck down to read, whilst walking or to look at things (like my smartphone), or bending my spine to do things – tends to also obviously increase the pressure in my head and make my ears feel full and pop. As does carrying moderately heavy things. So I am still super careful and gentle with movements involving my spine. I just can’t be sure that it’s OK to lift and bend much still, so I still self-impose many post-EBP style restrictions and tend to always kneel first to pick things up off the floor, unload the dishwasher or put washing in, or take it out, of the machine. Over time I have gently allowed my spine to bend and lift a bit more – but only very carefully and cautiously.
During my years of leaking and my experiences of rebound high pressure (post treatment) I always found sitting down would tend to increase the pressure in my head/ spine or increase my leak symptoms when leaking. So I used to stand a lot more when upright. This has improved so much and I can sit for longer and longer, but it is often still harder for me to sit (relaxed) for longer periods of time (the sofa can be the worst place due to the softness of the seat). I actually find I am better sitting with my back very straight and legs bent directly in front, with the soles of my feet touching the floor. Slouching, leaning back too far or putting my feet up is no good, at all, for my head or spine.
I know the sitting issues have also been aggravated too by the general ongoing tension up my spine. I personally hypothesise that much of this is probably down to the higher pressure/ higher volume of spinal fluid pushing against my nerve roots. But it’s obviously also linked to the years of pain and physical tension in my head and spine and also the lack of natural movement. It’s hard to know how to combat this much whilst still restricting movement. It improves little by little and lots of walking and the general rehabilitation of doing things around the house and going shopping (limiting how much is carried) etc helps it a lot, thankfully. But I have found that this can’t really be overcome by trying to ‘force it better’. Gentle movement and gentle lifting, whilst remaining very patient with regards to ongoing ‘pressure issues’ is so important. I just have to listen to my body and head. Trying to ‘push myself’ and rush this process of less pain and tension in my head and down my spine can just lead to relapse and in hindsight has probably contributed to my own before.
(In hindsight, I now think that I experienced rebound high pressure symptoms at least after my second (11 months post leak onset)and third blood patches (15 months in – when I was also treated with acetazolomide) but I always got worse again many weeks to months later. I do not know if I was also still leaking a bit too after any of my patches (apart from a bit after the first perhaps) or what exactly brought on the consistent obvious major relapses. (Apart from when I fell over again badly in May 2017). I always got much better after blind lumbar high volume EBP and could spend much more time upright – often all day – over the following weeks and months – but was never symptom free. But it’s all FAR too confusing to say for sure and the confusion only gets harder the longer you have been leaking. Medical professionals in the UK normally do not understand these medical conditions enough to support you well either. Which makes living through it immensely hard and another challenging battle to fight, whilst you are utterly exhausted and acutely hypersensitive to stress and anxiety anyway. This all contributed to a major crisis in my own mental health (see Breaking Through the Darkness), including acute suicidal ideation, 2 months after my second EBP. This almost reoccurred again 2 months after the 4th patch that sealed me, as I try to describe in my 6 month post patch update).
However, regardless of all the immense and overwhelming challenges of living with a ‘leak’ for so long and now enduring the slow recovery process…
There is still so much from the past few years to treasure!
So it’s that which I want to focus on to finish…
Beauty can become even more beautiful once you have tasted of deep pain and debilitation – a theme that I wrote about in ‘Suffering into a Deeper Spiritual Awakening’. I have certainly learnt more about what truly matters in life. I see and notice beauty even more clearly around me – throughout creation and in other people. My heart is so much more tender and compassionate. I truly FEEL others pain much more deeply than I used to. My understanding of other people’s struggles is so much more profound.
If I could go back and had the choice to have or not have the leak – of course in so many ways I wish we had never had to walk through such an awfully traumatic and exhausting season in life.
I would never want give up the beautiful lessons learnt or the wonderful people met. I could not deny the privilege of experiencing the depth of the valley of darkness – whilst actually being able to rise and recover again, as I hopefully increasingly move up towards more heights of better health. It has changed and increased the capacity of my heart in ways that I cannot even begin to fully explain. It has stretched my limited perspective and expanded my horizons. It has changed how I see and relate to others and deepened my love – for God and all people.
So with hindsight would I choose to personally go through such a desolate season of pain and suffering – because of what can be learnt and gained?
If I could have known, in advance, what the never-ending, deeply dark, valley entailed, I could not have chosen that road for myself or my family. Nor would I choose for anyone else to go through it either. Which is why I continue to raise awareness about the realities of living with the condition. In the hope that others will not have to suffer as deeply and as long as I have.
But… I would choose the new heights of beauty discovered in and from the depths of pain. Because they have transformed me for the better. They have brought holistic growth and resilience in ways I could never have achieved without going through such a raw deep struggle. I have also been able to connect and help others going through the same hell that I had to.
I have honestly been utterly shattered and broken by the past few years – in so many different ways.
To be ‘broken and shattered’ is not always a bad thing long term. It strips you back, shows you what is truly important and gives you a new perspective on life and love. We can then hopefully one day, perhaps one day, become even more stable, loving, humble, understanding and holistically healthy people in the end. Until we can truly see that the years of pain become an investment for a better future – all round – that we previously could not see.
So for all those still suffering immensely with these awful conditions. I honestly feel the depths of your never-ending pain with you – but please take heart!And do not give up hope! Last year I wasn’t sure I could or would ever be well. I wasn’t sure that I had the strength left to make it through another day of fighting on so many different levels. I had again reached the absolute end of myself. But my journey shows that we really do not know what tomorrow might bring. That is why I have wanted to tell you my own story. In the hope that we will keep holding on and hoping for a better future – we cannot yet see – together.
“Only if you have been in the deepest valley, can you ever know how magnificent it is to be on the highest mountain.”– Richard M. Nixon
Please do comment or ask any questions below. Or alternatively you can email me at email@example.com
Here is a medical journal publication about rebound intracranial hypertension (rebound high pressure) as a complication of epidural blood patching.
Please see this 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 3 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstandings and great distress on my already immensely long winded and difficult medical journey.
“Compassion asks us to go where it hurts, to enter into the places of pain, to share in brokenness, fear, confusion, and anguish. Compassion challenges us to cry out with those in misery, to mourn with those who are lonely, to weep with those in tears. Compassion requires us to be weak with the weak, vulnerable with the vulnerable, and powerless with the powerless. Compassion means full immersion in the condition of being human.”– Henri Nouwen
The meaning of the word compassion is literally ‘co-suffering’ or ‘to suffer together’. Compassion is not simply a feeling that comes and then passes like sympathy or pity. Having compassion is being so deeply moved in your heart with the pain of another that you are compelled to act to somehow alleviate that suffering.
We are literally ‘joining together’ with the one suffering to help and support them.
It’s actually a deeply painful emotion. But the intense feeling is not focused on ourselves – it focuses on ‘the other’ who is suffering in some way. This means, although painful, it is a deeply beautiful and even freeing emotion. Because it takes the focus off our own challenges, trials and pain and focuses our attention on supporting and helping someone else.
However, the irony of compassion is that we only truly feel it, and are moved by it, once we have first embraced our own life struggles and pain. Until we recognise the pain that suffering brings to us, we cannot truly begin to understand the pain it brings to others.
This is why some of the most compassionate people you will come across are those who have felt a similar pain to yours. It may not have been exactly the same, but they at least experienced it enough to see it and feel it in you.
Compassion is linked to empathy. Empathy enables us to understand and relate to what someone else is feeling. Compassion then takes empathy a step further, in that those empathetic feelings are intensified into a passion that leads to action. We are deeply moved to act! To do something to alleviate the person’s suffering. That act might be seemingly big or small, but it will be something that we actually do practically to help them. Motivated by the hope that it will help alleviate that persons suffering – even if only a little.
I really do love the quote at the top by Henri Nouwen. I believe the last sentence is particularly poignant:
“Compassion means full immersion in the condition of being human.”
What does he mean by this, what is the ‘condition of being human’?
To me one of the most striking characteristics of our humanity is our brokenness. It’s the fact that we are all born as vulnerable, weak and dependant babies. And we will also all die vulnerable and weak from sickness, an accident or old age. Our human body has a fragility and mortality about it which means that we are plagued by weakness in different ways. We have many vulnerabilities; physically, mentally and emotionally. We are all prone to seasons of suffering and struggle. We are also all imperfect, we all make mistakes.
There are no humans who truly make it through their whole lives feeling perpetually strong, having it ‘all together’ the whole time, without any obvious weakness, vulnerability or struggle. Some people might like to project that mirage to others but the reality is we are all imperfect and fragile in similar and different ways. The fact is, our common humanity dictates that – if we do live to old age – all this will become more than evident, as eventually our body and mind fade and stop working altogether. If we do not live that long then death perhaps will ‘take us out’ early, again brutally revealing our weakness and mortality.
It’s this understanding of our ‘common humanity’ that helps us to become more loving, empathetic and compassionate people. This is why it is actually in times of trial and suffering that our deepest bonds with other humans can be formed – through mutual understanding, love and compassion. This is because it’s often only as we come brutally face to face with our own personal weakness and vulnerability that we can potentially connect more wholeheartedly with others because of it.
“The strongest relationships are formed in the heat of difficulty and the confession of weakness… honesty breads more honesty… it’s about sharing our common humanity.”– Patrick Regan
Those we can share our whole lives with – our struggles, pain, vulnerabilities, weaknesses, shame and guilt – are those who we generally form the strongest bonds with. Relational safety comes in someone knowing our weakness and failings – but loving and staying loyal to us anyway. This is always when our connection with others becomes more deeply profound.
This is when love is most beautiful and its bonds become most powerful.
It is only when someone sees the depths of your own ‘darkness’ – but chooses to love you regardless – that the true beauty of deep relational connection blossoms. There is perhaps nothing more deeply moving in life than this. This is where true unconditional love abounds.
This is also the place that our sense of compassion is potentially deepened, because we have arrived at a place where we know what it is to be faced with our own darkness, vulnerability, suffering and shame. Our hearts can potentially become softer and more malleable towards others. We have been humbled by the distressing awareness of our weakness, which can make us kinder and more understanding to other’s weaknesses.
However, you will see that I used the word ‘potentially’ in that last paragraph twice! The truth is, not everyone who suffers will show increasing compassion to others. This is because suffering can go two ways: it can cause us to become more self consumed, hardhearted, angry and bitter OR it can help us become more tender, understanding, compassionate and loving.
Ironically, embracing our own weakness and pain in seasons of suffering – but then turning those feelings outward to focus it on having compassion for others – can actually help alleviate the suffering of both of us. Suffering always grows darker the more it pulls us back into ourselves. Compassion, instead, provides a light for the both the giver and receiver – as the giver directs their own pain into helping alleviate the pain of someone else.
Acting to alleviate another’s sufferinghelps bring more meaning and purpose to our own.
In reality though: in what ways can we practically act compassionately?Especially when in so many situations what we can actually do is so restricted?
The thing is, compassion doesn’t demand that we fully fix another’s difficult situation. For instance, when I was immensely suffering from an acute spinal fluid leak in recent years – I couldn’t reach out to another, who was also leaking, and fix their main physical problem. As much as I would have liked to have done so, we were both somewhat at the mercy of a debilitating and misunderstood condition. We couldn’t actually ‘fix’ it ourselves – we needed compassionate doctors to help. However, there are so many ways I could respond to and share another’s pain and act with compassion to their suffering.
Just telling another that we ‘get it’ and understand their pain can be an act of compassion. Which is one of the reasons I decided to write so honestly in this blog. If we can humbly ‘get over’ our own fears and insecurities of ‘getting real’ about our struggles, we can then choose to act compassionately by connecting and reaching out to another honestly – amidst our own, and their, pain. We can’t just think about it – that is sympathy or empathy. Compassion calls us to act on those feelings and practically connect to encourage, support and hopefully help alleviate some of the potential loneliness of suffering. Simply hearing ‘I get it’ means a lot to someone really struggling. This is often the first step in acting compassionately.
Giving your time to support someone struggling through spending time with them in person, over the phone or digitally can be an important act of compassion. Often patiently listening to them process their struggle and trying to understand their pain can help them immensely. Or simply looking for ways to encourage or uplift them in an empathetic way by sending some kind words, a card or gift. Practically, if we do live near by we might show compassion by cooking a meal, taking their kids to school or on a day out, or offering to drive them to a hospital appointment.
Little acts of compassion can speak the loudest when someone is struggling to make it through the next hour, let alone the next day. It was often the things above that spoke the loudest to me at the darkest moments of my own journey with a debilitating long term illness.
“Do small things with great love.” – Mother Teresa
Compassion doesn’t always require us to do something BIG! In fact, normally we can’t do something big – even if we had more time and resources. Many situations cannot be changed overnight with one action. There is a long and arduous process involved in acceptance, change and potential recovery. Compassion is often most profoundly shared in the little acts. The little things that shows someone in pain that you understand (or are trying to) and that you care.
We need to keep in mind that the first step to being ‘moved with compassion’ – in choosing to ‘co-suffer’ with another – is that genuine compassion requires us to SEE and feel that person’s pain and struggle first. Before we do or say anything! That way, our words and actions will pour out from that heartfelt overflow of empathy. They will then be more obviously genuine and tender. You can’t fake compassion – it is easy to see in someone’s eyes, words and body language whether their supposedly compassionate words and actions are truly real or simply forced. In my own experience this can often be a problem for members of the medical profession, especially those who have lost that connection with their and their patients ‘common humanity’.
Genuine compassion will only flow out of our true hearts, when we have first seen, felt and embraced our own pain, vulnerability and weakness. If we have not done that effectively, if we insist on denying and attempting to cover over our own human brokenness, we will simply become increasingly self focused and self absorbed human beings who spend their time pridefully keeping up their mirage of strength and pretension at other’s expense. This will inevitably end up with those people getting increasingly frustrated with others or even despising other’s suffering – rather than being moved with compassion by it.
Is it not time to see more compassion in our world? Whether it’s loving the poverty stricken orphan in Ethiopia through child sponsorship, or simply actively listening to or taking a meal round for a friend or neighbour who is struggling. Can you imagine if our neighbourhoods, schools, hospitals and workplaces were full of truly compassionate people who knew personal pain, but could look past it, to recognise it in another. We could then support one another through the ups and downs of life without judgment, misunderstanding or ignorance.
Perhaps, if we embraced our own pain more, tried to understand it, then turned it outward to connect with another equal human – then we would all suffer a little less throughout our own unique life journeys. Compassion rarely makes all the pain go away. But all of our collective small acts of compassion can become another necessary cog in the bigger wheel of changing our world for the better – person, by person.
“Love your neighbour as yourself.” – The Bible (Mark 12:31)
So let us not forget that we are ALL the same. We all share a common humanity. We must try to love as we would want to be loved. Try to care, as we would like to be cared for. Try to understand, as we would want to be understood. Try to show the compassion that we would like to receive.
In the hope that little by little, kind word by kind word, small act by small act, we might help alleviate some more of the suffering and pain in this world – TOGETHER!
“Compassion asks us to go where it hurts, to enter into the places of pain, to share in brokenness, fear, confusion, and anguish. Compassion challenges us to cry out with those in misery, to mourn with those who are lonely, to weep with those in tears. Compassion requires us to be weak with the weak, vulnerable with the vulnerable, and powerless with the powerless. Compassion means full immersion in the condition of being human.” – Henri Nouwen
“Any great calamity in the natural world – death, disease, bereavement – will awaken a man like nothing else could and he is never the same. We would never know the treasures of darkness, if we are always in the place of placid security.” – Oswald Chambers
If you have ever faced pitch black darkness – you know how hard it is to get around. In that place, if you want to get somewhere, you will have probably also experienced the desperate longing to discover more revealing light.
We tend to fumble around in darkness, utterly lost and insecure about where our feet should go. We have to move so slowly. Feeling our way around and through. Hoping to find a flicker of light, some moonlight, a torch or that revealing light switch that should instantly show the right path ahead.
In pitch black darkness, we all know that we must move towards a source of light to find a way out.
I can still vividly remember being on holiday in Menorca years ago – when our kids were small. We were staying in a small villa, which had shutters and at night was pitch black. One night, one of our small girls screamed out after having a nightmare and I literally jumped out of bed, half asleep. I instantly felt completely disorientated and enveloped by the confusion of the darkness around me.
Where was I? How could I reach my screaming child? Where was that light switch that I desperately needed?
In the pitch black, fear and anxiety often overwhelm you. Especially when you face the urgency of trying to get to your screaming child. In that moment I felt completely and utterly helpless as I felt the walls, trying to recall where that light switch was.
Eventually – after fumbling around for ages – I found that precious switch. With it came a stilling burst of light. My panic began to subside as I could see the way to reach my distressed little girl in her own room. And as she felt my presence in the light, as I held her in my reassuring arms and listened to her describe her scary dream – I was so thankful for that light.
The same is true in our lives.
Times of deep darkness disorient us.We can panic and become anxious as our way forward is hidden. We might fumble about trying to find a source of light to make the path ahead clear. We can feel desperate – longing to discover even a flicker of light.
Darkness quickly feels enveloping and all consuming. Its black fog often starts to seep into every area of our thoughts, emotions, actions and lives. We can’t seem to shake it off. Its mist covers everything we do. Until we feel like we are slowly being sucked to its desolate and empty core of despair.
And as it does… the desperate longing and need for light increases and intensifies every hour of every day. Until we know the flicker of a flame – ‘a little hope’ – is not enough anymore to guide us through the dense fog we are immersed in. We need a more powerful light – a more ‘substantial and secure hope’ – to get us through and illuminate, reveal and secure the path ahead.
But it is also in the ‘deep darkness’ that the ‘treasures of darkness’ are waiting to be found.For it is only in that place that we truly see how much we long for and need the light to survive. It is only when our eyes are blinded by the darkness that we fully realise the depths of our desperation and longing for the light to again truly SEE!
The past three years,or so, have been the hardest physical, mental, emotional and spiritual challenge of my life. My journey through an utterly debilitating chronic illness following my accident in January 2015 left me feeling more broken and weak than I ever have before.
I have increasingly discovered that ‘broken and weak’ is the avenue God uses to draw us more deeply towards Him. It is in true human desperation that we realise how little strength we really have alone. Weakness, and the subsequent new level of humility it can usher in, is always the path to discovering just how deeply we need God.
But the stark reality is – the intense journey of brokenness is truly a painful and raw place to walk. Where layer upon layer of self-sufficiency, self-security, self-identity and self-confidence are brutally peeled away. Leaving us more and more exposed in our human ‘naked’ vulnerability and fragility. Even as you begin to tentatively emerge and ascend out of the valley of deep darkness, you can still feel very battered, bruised and disorientated from the utterly exhausting and often overwhelming fight.
Finding your way through the darker valleys of life, although intensely difficult, can also be an exceedingly beautiful journey; as your heart is softened, opened and humbled like never before.IF – and only IF – we truly invite God into the hidden depths of our vulnerability and pain.
It is only then that we discover and SEE the light of His love,
More intimately. More stunningly. More remarkably. Than ever before!
“The Lord is close to the brokenhearted; he rescues those whose spirits are crushed.”– Psalms 34:18 (The Bible)
It has not always been easy on that relentless journey through life’s darker valleys. There have been moments of anger at God. Thoughts of betrayal. So much lack of understanding about what was really going on. I have had to wrestle through intensely difficult questions and thoughts.
I needed to ‘discover more of God’ in a FAR more real – and yet gritty – way.
I have also had to come to a deeper acceptance of the fact, that we all currently live in a ‘broken world’. And that it is probably not going to change, for many of us, any time soon.
The world was originally created perfect, with God, humanity and creation living in perfect ‘Shalom’ (peaceful)completeness, wholeness and harmony. But ever since humanity decided to do things ‘their way’ rather than the ‘Creator’s way’ in the garden of Eden. The ‘completeness and harmony’ of creation has been fractured and has been subsequently breaking down & slowly falling apart. Sickness, disease, genetic deformity, natural disaster, selfishness, rebellion and pride all entered the world as a consequence of that ‘fall’ and separation of humanity from the Perfect Designer of the universe.
It doesn’t mean God wanted me – or any of us – to be sick. Or that He caused me to fall that day to teach me a lesson. Sickness is just part of our broken world that is groaning to have its ‘Shalom’ completeness restored. God wasn’t the ‘author’ of my sickness, but He does promise to work with our fractured creation and turn it around for my good.
“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” – Romans 8:28 (The Bible)
Over the past few years I have increasingly ‘groaned’ alongside the whole of creation for the ultimate redemption and restoration of the Shalom. Matt and I have also never been more aware of the deep, yet at times exceedingly painful, tension that exists between the ‘now’ and the ‘not yet’. Between God’s perfect kingdom and the current world in which we live.
This life is our ‘in the meantime’ life…
Yet the promise is that we can also begin to increasingly experience the ‘not yet’ perfect kingdom of God – His Shalom – in the ‘now’ through Jesus Christ. Jesus broke into His fractured creation to reach broken humanity. He came to live in the centre of the tension – as one of us. To see and then experience the deepest and most painful suffering here – to bring the ‘not yet’ of God’s glorious kingdom into the broken reality of creations ‘now’.
God’s complete ‘Shalom’ (perfect, whole life, restoring, enveloping peace) is what we ALL yearn and long for in the depths of our spirits and souls. Especially in the midst of suffering. But it is not just a ‘fuzzy’ feeling of ‘inner peace & calm’.
‘Divine Shalom’ – is so much more!
It is the stillness of our entire being – even amidst the storm. It’s illuminating light – even when everything appears dark. It’s the divine ability of undeserved grace – displayed through our human weakness. It loves us whole – in the reality of our brokenness. It is perfect completeness – in the midst of our imperfection.
It’s so very hard to explain to you – with simple words – what has happened to me spiritually over the past three years. How can mere words describe the indescribable?! The only way I can explain it to you is that it was a profoundly deeper ‘spiritual awakening’.
I now SEE with new eyes. I now HEAR with new ears. I now FEEL with a new heart. I now THINK with new wisdom.
My own human ‘nakedness’ of weakness and vulnerability has been exposed and uncovered to a much greater depth. And it was in that place that I found more indescribable divine Love waiting patiently for me. It was as if, all the way through my journey of brokenness and pain, I was being drawn further to seek and discover, being taken deeper to search and find.
It was only when I saw and felt the depths of my weakness and inability that I experienced the glorious wonder of His strength rising up within me. It was only as my self-reliance was brutally crushed by my inability to cope, that my dependency on Him grew so much stronger. Until from deep within the broken clay jar vessel of my life I cried out to the one who created me…
“Make me whole again Daddy. Then shape and fill me anew, Holy Spirit. Mould me into Your Divine image Jesus. Nothing else really matters… All I need is You!!”
I had again reached that intimate place of deeper surrender.
When the darkness intensifies – our need for light increases. When blindness envelopes us – our longing to SEE truly grows. When our inner being is parched and empty – our spiritual hunger and thirst becomes more desperate. When the world can only offer silence – our spiritual ears long for His eternal song.
When trying to describe spiritual – awakenings, encounters or experiences. We often use ancient images, words and metaphors. That to some might sound ‘cryptic’. To others may be simple ‘poetic words’. But to those of us who have truly tasted and experienced the eternal immeasurable love of God – Father, Son and Spirit. To those who have discovered Him waiting for them in their deepest brokenness and pain. To those who have seen His mesmerising light in the darkness. To those who know they cannot live without His beautiful grace…
Such words truly connect with the deepest longings of our hearts. Desires that we know nothing in this world can even begin to satisfy.
I wrote these words about my recent struggles to inspire us today. So that – together – we can again perceive the divine call to our souls – in the midst of suffering – to stretch further, to reach out deeper and uncover more of the dazzling light of His Truth, that will enable us to SEE and experience more of …
…the stunning, transcendent, everlasting – yet intimately personal and experiential – Triune GOD…
Who is pure unconditional LOVE. The Author of undeserved GRACE. And the central beating heart of the perfect infinite SHALOM.
“If I find in myself desires which nothing in this world can satisfy, the only logical explanation is that I was made for another world.”― C.S. Lewis, (Mere Christianity)
Click here for a great video explanation of the Hebrew word ‘Shalom’
For more posts about my three year battle with a spinal CSF leak – please click here or click on the CSF Leak tab at the menu above.
Our greatest glory is not in never falling, but in rising every time we fall.– Confucius
It’s been a while since I have written here. The last six months have been a season of deep trial and anguish, whilst simultaneously becoming a season of great joy. My ongoing health battles have been truly exhausting and yet…
I am currently seeing some light at the end of the tunnel.
And today, I have rediscovered my voice to share my story.
Following just about holding on through the immense challenges of the the last three years – since I fell off that ladder in January 2015 – I can now pretty confidently say that it seems that I am currently in recovery from my CSF leak. We are hoping that this time – following epidural blood patch number four last September – that I can make a full recovery.
At the moment it looks like we are heading that way. And yet my three year journey has been full of a cycle of injury, treatment, recovery and relapse. So it has been intensely difficult to definitely say to the world – “this is IT!”
Although that is of course the hope and dream.
Following my long summer of 2017 spent almost totally flat in bed(or on my beautiful garden bed outside) I had a CT Myelogram scan mid September to try and locate my spinal CSF leak. Traumatically, the scan caused me to have an epileptic seizure and yet failed to evidence my leak. Such is the challenge of looking for these elusive leaks – 50% of which are never actually found. I was subsequently then left even worse off than I had been – hardly able to walk or be upright for more than a few minutes at a time. So I stayed in hospital and a week later I had a 40ml lumbar epidural blood patch (after the first one was aborted due to the needle going too far). Two days later it appeared that my headaches had shifted from low to intense rebound high-pressure headaches and I was finally discharged with the diuretic acetazolomide to help these new headaches.
High pressure headaches point to the fact the blood patch has probably worked – however the journey of trying to discern what is high or low pressure is not for the faint of heart.
In fact – over the next few weeks – it again almost completely floored me.
Over the following couple of months I was extremely unwell, even though I could be upright much more. This took its toll on my mental health as I struggled to work out what on earth was going on in my crazy body. One day I was sure it was rebound high pressure symptoms and the blood patch had worked – the next I was convinced it was still low pressure and that the treatment hadn’t worked. Day by day, week by week, the confusion and debilitation of severe neurological symptoms and pain – both upright and lying flat – and an inability to rest and sleep properly – took its toll on my mental health. Until I realised – if nothing changed quickly – that I was heading towards a second complete mental breakdown. (Like the one I had had a couple of months after my second epidural blood patch in November 2015).
When suicidal thoughts began to again abound – as I again convinced myself that I was probably still leaking and would maybe never get well – I knew I had to take radical steps to calm my terrifyingly restless and anxious thoughts and again find a way through the anxiety and confusion.
“A person who worries still thinks in some way that he can solve his own problem. Worry is the mind racing around trying to find a solution to its situation” – Joyce Meyer
The darkness of hopelessness and despair began to wash over me like a flood – mixed with the sheer exhaustion of three years of fighting and partially recovering and then relapsing again and again – and I was slowly beginning to feel like I was drowning again mentally and emotionally.
My legs were madly trying to tread water to keep my head above the waters – but some moments of some days I felt far too worn out to keep battling to stay afloat.
But what choice did I really have – right?!
There is no choice – because the only other choice is the unthinkable… and yet in the darkness you DO think the unthinkable. In the silence of pain and debilitation – your mind can end up in a scary place.
You just need it all to go away…you just need the pain and struggle to end…
You even sometimes naively wish what you had was terminal – because at least then there would be an end.
There needs to be an end.
There has to be an end.
How do you keep going, when you don’t know how long you have to endure? It’s the not knowing that feeds the anxiety, it’s the fears of getting worse that drain your depleted energy… and yet there is no escape.
You just need an escape…
But then you become consumed with guilt and shame for being so selfish to not only think – but at times dwell on such horrible things. Because if I love my family then I have to endure – because love never gives up!Right!? Unconditional love endures till the end.
…And yet how do you keep on going when you are utterly exhausted and at the end of yourself.
It’s a vicious cycle.
I even shouted at God on a few occasions to make it all stop because I couldn’t take any more of it. I told Him I wasn’t strong enough to keep on fighting. I was utterly worn out in every way – I pleaded with Him for no more pain, no more medical battles, no more clear scans, no more chaos in our life, no more crazy debilitating symptoms!
Shame was pulling me back down into its dark clutches. In my mind shame taunted me with the fact I was too weak, the fact I couldn’t cope, the fact I was chronically ill and couldn’t get well, the fact I had seizured after the CT Myelogram – so thought no one would do any more scans like that now to try and find the leak. The fact that I thought soon enough Doctors would give up on my difficult case.
I heard a voice within me screaming; ‘You can’t do this! You might as well give up! You will never get well – your worthless life will be full of this kind of pain for good. It won’t get better. It will only again get worse. Relapse is inevitable – and you will only go and muck up any healing again anyway!!
I HAD to still those relentless voices. I HAD to rediscover the voice of hope. I HAD to somehow find a way to discipline my restless mind. I HAD to trust God for the strength to somehow make it through.
“If you hear a voice within you say, ‘you cannot paint,’ then by all means paint and that voice will be silenced.” – Vincent Van Gogh
I had to find the voice of faith, unconditional love and abundant grace.
That still small voice that is always whispering to my heart telling me: You CAN do this and I AM is here helping you through.
I couldn’t do it alone. I needed Him to walk me through. I needed Him to talk me through.
I needed His voice. I needed to draw closer to His heart to hear His whispers. His words became my breath of life. His truths lit up the path ahead.
Moment by moment Day by day
I somehow made it through…
Even when it seemed impossible.
“You will keep in perfect peace all who trust in you, all whose thoughts are fixed on you! Trust in the Lord always, for the Lord GOD is the eternal Rock.” -Isaiah 26:3-4 . The Bible.
Things began to settle down a bit a couple of months or so after my fourth blood patch and I began to discover that I could be upright more and walk further – little by little, week by week.
But I knew I had to protect any progress.
I needed to focus my mind and fix it on more hopeful things.
I knew I must use my thoughts to meditate on more calming concepts.
I had to shut down the multitude of voices that surrounded me and work on listening to the one I most needed.The voice that whispered, ‘be still’ in the midst of the raging storm. The only voice that had the power to break through the deep darkness that enveloped me, with the light of true abundant life. The voice singing songs of love over me – as He navigated my broken vessel through the raging seas.
And, …step by step… …hour by hour… ….day by day… …week by week…
I am finding my way into more and more peaceful waters.
Physically, mentally, emotionally and spiritually – calmer times have come.
I am not yet ‘back to normal’ – back to where I was before I fell that day in January 2015. And yet, I can be upright ALL day long without needing to lie down. Week by week I am growing in confidence in what I can do. Month by month my strength is building and my body is in less pain and is more fully relaxing.
I still have issues in my head. My Neurology Consultant and I agree that it seems to be a ‘hypersensitivity to higher pressure’ – so I still need a lot of calm and quiet in my days. I cannot rush about like I used to. Stress, raising my voice, singing, talking too much, bending, lifting, going to the loo – and similar things – all increase the pressure in my head.
But it is improving … slowly … and it is gradually heading in the right direction.
So that I can hope, believe and dream again – that one day I will be fully free from this horrendously debilitating condition. Free from the monster that has plagued the last three years of my life and attempted to rob far too much from our family. I still have to fight the fears of relapse – because that has been my very real experience so very many times.
But I HAVE learnt so much on this crazy recovery story – and those around me have learnt so much too.
Doctors are learning how better to treat this condition – because I chose to open up my life and to keep them informed. Patients are learning how to find a way through – because I chose to speak up, challenge misguided opinions about the condition and reach out amidst my pain. Christians are finding a way to endure seasons of great suffering – because by His grace I have somehow managed to wrestle through.
And one day – one fine and beautiful day to come – I hope that I can fully enjoy and embrace the wonder of hindsight.That in a time hopefully coming soon – I can stand on the mountain top and tell the world that I managed to just about endure and somehow made it through the pain. I have always known that that will be a glorious season – where I will shout, sing and share the tales of complete restoration and stunning redemption from the intense struggle. Where I can testify to how God brought our family all the way through.
But in the meantime…
….whilst things are still a little hazy and complete recovery is a dream not yet fully attained… I want to tell you of my gratitude.For life, love and breath in my lungs. For my amazing husband, my enduring children, my loving family, dear friends and wonderfully supportive church. I want to tell you about all the wonderful doctors and nurses that have helped me through – even when their understanding was so limited. I want to speak of my gratitude that I can currently be upright ALL day, that I can walk for miles whilst listening to music or inspiring words. That I can drive locally, go to the shops, visit friends, eat in a cafe and sit up in church.
I need to tell you that when you have tasted of utter debilitation, that being able to DO things again is a wonder to behold.
However, most of all I need to tell you about the fundamental thing that has brought me through.
He is known as Jehovah – the stunning three in one God – who so very many people don’t yet know. He is my light in the darkness. He is unconditional love in the midst of trial and sorrow. He is my undeserved grace when I completely fall apart and shout at Him in anger and despair. He is my comforter when I am distressed. He is the still small voice that sustains me. He is peace to my anxious thoughts. My fountain of life. My inner calm.
He is the way, the truth and the life.
But most of all I need to tell you that in and through His stunning grace – He carried me – on the days I never thought I would make it through. Sometimes through my husband, children, family and friends. Sometimes through a song or inspiring words that someone chose to share. Sometimes through the prayer offered up by someone who saw our pain. Sometimes through a whisper on the wind picked up when my heart and mind were finally still.
So I will ALWAYS hold fast to Him and listen to His songs of love – until that day comes when this beautiful scripture becomes my physical – as well as – my spiritual reality.
“My beloved spoke and said to me, “Arise, my darling, my beautiful one, come with me. See! The winter is past; the rains are over and gone. Flowers appear on the earth; the season of singing has come…” – Song of Songs 2:10-12. The Bible.
My dream is that one day I will sing again – with all the breath in my lungs – without it hurting my head.
And on that day I will sing a new song of never ending love from my soul, to the ONE who carries us through our deepest, darkest pain.
Here is a medical journal publication about rebound intracranial hypertension (rebound high pressure) as a complication of epidural blood patching.
Please see this 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 3 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.
“Out of clutter, find simplicity. From discord, find harmony. In the middle of difficulty lies opportunity.” – Albert Einstein
Over the past couple of years I have often felt like my life has been aggressively and almost completely stripped back. The core of my life is still much the same as it has always been. Yet I often feel like a tree that has been radically pruned. With so many of the branches of my identity and the things that I used to do being brutally chopped off and left to die. Leaving something quite exposed and bare, with many stubs where branches used to be.
When you spend most of your day lying down, and the time you can be upright is exceedingly limited by various intense and horrible neurological symptoms, you find that your life becomes extremely restricted. Everything becomes immensely simplified in many ways (even though there are also many complexities to contend with too). Life mainly consists of things you can do lying flat, or the few limited things you can do whilst upright – although still feeling very ill.
It’s been a very challenging journey to embrace a more simplistic life.
It doesn’t help that we live in a society that often glorifies busyness!
Our Western society is full of people who often seem to wear badges of importance – based, in part, on how busy their life is. Most people are forever expressing how immensely busy they are. This makes it extra hard for those of us who are ill long term, because we have to instead embrace a new identity that can no longer be defined by our busyness. Suddenly we can feel somewhat detached from normal society – a bit of a ‘nobody’.
Everyone around us seems to be carrying on with their ‘normal lives’ whilst we feel like ours is stuck.
We live in a never ending state of limbo, not knowing if or when it will change.
“… we are defined by what we do. Our careers. What we produce. It’s the first question asked (of us) …The implication is that if I am not busy doing something, I am somehow less than. Not worthy. Or at least worth less than those who are producing something.”
I really do believe that this is a massive problem for those of us who face long term debilitation.
We not only have to take a very humbling journey of coming to terms with it ourselves; we will also often have to face others’ questions, attitudes, and sometimes prejudice – as well as naivety and ignorance – towards our disability and inability to do what we once could do.
We find that we begin to lose much of our identity, because it feels like we are not doing much anymore. Rather than being an active member of society – we feel pushed to the side lines, often misunderstood and sometimes even forgotten about.
We are suddenly not so sure who we really are any more and our condition begins to knock our confidence – until we perhaps no longer feel like we ‘fit in’ with normal society like we used to.
Over time, we realise that we have to go through a deep and painful process of grieving and letting go of who we once were. And much of what defined us.
So that instead we can truly embrace who we are now – in this season. We actually have very little choice in the matter – if we cannot change our current circumstances ourselves then we have no option but to accept it and find a way to live the best life we can amidst all the restrictions.
I learnt over time that I had to stop torturing myself with what I could be doing IF I was well.I had to give up imagining how different life could be if I was healthy. I had to refuse to compare myself to what ‘normal’ people were doing and instead embrace the quieter and more simple life, of mainly being at home, often lying down. I had to see the opportunities that could be found here instead.
We must learn to establish a daily discipline of choosing to see the beauty and wonder in simplicity. To somehow embrace a simpler life. The more I go on that journey – the more I see that there are still so many things to be thankful for and enjoy here.
Despite the restriction, debilitation and pain.
Really it is all a matter of perspective. As many things in life are.
Attitude is everything!
Since I have battled this chronic illness I have realised more than ever that we are often fed a lie by society and the media that our life should always be lovely, fun, immensely satisfying and great. Everything should be as perfect as it can be – and it will be – IF you have enough money, health, great jobs, nice homes, loving families, expensive holidays and up to date gadgets etc. Then we will all be perpetually happy.
BUT it’s just not true!
Hence why there are so many miserable, struggling people who actually have all those things in abundance. Sometimes it’s the people I know who have the most of all those things who are the least happy. Mainly because that mindset draws you into a never ending cycle of desiring more and more – which only leaves you increasingly discontented in the end. Because there is always someone around who seems to have a better lot in life and appears to be happier than you.
I have learnt so much through my two-year journey about trying to be more grateful for the small, everyday things, whilst learning to let go of ‘the dream’ of ‘normal living.’ In doing that (which is a very raw and painful grieving process) I learnt I could find so much joy and wonder here too. And if I can find it here, then I will be so much happier – as well as more content and thankful – when I do hopefully get well. If I can learn contentment without having all the things the media tells me I need – then I will be happier for a life time regardless of whether I stay sick or get well.
It’s a lesson I have also had to embrace with regards how I parent my children. It truly is heartbreaking when sickness robs you of being the parent you always desired and planned to be. It’s a very difficult thing to face and unfortunately you can find yourself envying other healthy normal parents, which doesn’t help.
When I experienced a complete physical and mental breakdown at the end of 2015, it was the grief of letting go of being the Mum I was and wanted to be that caused some of the deepest inner pain. I am so very thankful that my girls are now that bit older and slightly more independent, which makes things so much easier for us as a family. And yet currently I can’t go out with them or do most of the fun or even necessary things we used to do.
I really am currently stuck at home, mainly lying flat, nearly 24/7.
However, I have also learnt that sometimes my kids can learn better life lessons from us facing this as a family than they could if life was just ‘normal’ and great. I realised that if I can’t find a way to truly live here, in the midst of the disappointments, then how can I help them to know how to face their own challenges and disappointments in life? They will certainly come at some point. If as a parent I can’t come through the crisis, then what does that teach them? But if my children can learn how to endure life trials – from me and my husband – then they will hopefully be much more stable and wholehearted adults.
Adultswho can weather the storms of life and stick out long term relationships much better. Meaning they may well be happier and more fulfilled adults because of this. It will also hopefully help them to grow in compassion for others, so that they learn not to ignore or avoid another’s pain, but instead look at how they can share it and help support another in and through it.
Compassion is a stunningly beautiful quality to have.
As my body is so restricted on the outside, I actually often feel the energy of what’s within intensify. It’s like there is this ball inside me with a mixture of so many different emotions. I know I have to redirect the ones that want to pull me into a dark place and allow the positive ones to become increasingly dominant. So I am trying to focus my own pain on connecting and helping others in theirs.
I have decided that I must find a way to live like this – so that I can help another walk through their own deep darkness of facing this condition or similar debilitation.
It’s allowing the love, grace and compassion that is within me to break out to help someone else. It’s channelling my hurt into feeling another’s pain with them so that I can then say, “How can I help you today? What advice can I give you from the lessons I have – sometimes painfully – learnt over the years.”
These are some of the simple things in life that I can still embrace and still do. And it’s when I am focused on things such as these that I am drawn less into only seeing the negatives of my current predicament. It is then that I often find the beauty that is found in simplicity. And it reminds me that even if my body remains debilitated, on the inside I can still feel fully alive.
So let me embrace the wonders hidden in the simplicity of my current circumstances. Because if I can do that – in this place – I will hopefully discover a deeper contentment and satisfaction that may well last a lifetime as well. So that IF one day I can leave this whole immensely difficult season behind for good, I will at least have learnt more lessons and disciplines through it that will become the firm foundations of my life tomorrow.
So that although I have had to experience a major pruning and cutting back that has left me looking exposed and bare today, perhaps in the end it will simply leave room for growth that will allow new shoots to form tomorrow. Producing a stronger tree in the future that is happier, healthier and bears good fruit in the right season.
None of us know what tomorrow will bring.
But if we can all learn and grow enough today, so that we can somehow find the inner strength to face whatever might be thrown at us tomorrow, we will be able to take our stand in the crisis and allow this cry to rise up from within us to say:
“However bad this gets and however long it goes on for… I am determined to find the best life that can be lived here – in all its gloriously redefined simplicity.”
“There is no growth without change, no change without loss and no loss without pain.” – Samuel Chand
One of the most painful, yet ultimately liberating, lessons I have learnt since being ill long term, is the potential suffering has it has to bring far more humility and compassion for others into our lives.
Anyone who has suffered from any debilitating chronic illness, a life changing disease or injury, or has gone through a season of suffering due to the loss of a family member, or other traumatic events, will tell you that it truly humbled them in a way normal life never can.
When things go wrong in our lives we crave to have normality back – as if it’s the most precious gift of all. We fondly remember how much easier life was, even on the ‘tough normal days,’ when we had our health or loved one and life was going ok.
But when you have faced some kind of personal tragedy, or some kind of deep suffering barges its way into your life, you soon learn how hard it is to lose what you perhaps took for granted before hand. You discover how much your confidence and coping mechanisms get crushed.
It is often only in suffering that we truly learn who we really are. We become more aware than ever of our many personal frailties and weaknesses.
We wonder if we truly have the strength to make it through.
It’s usually only when we see what ‘rock bottom’ truly looks like for ourselves, in all it’s darkness, pain and desolation, that we begin to understand how ‘rock bottom’ looks and feels for others.
When you meet people who have faced suffering like you, or even differently, but in a similar light to you, there is a knowing look shared between your eyes when you meet, or a deeper message running through the words when you talk. There is a heart connection that silently says, ‘Yes, I know…. life is so very tough sometimes…. I know what it’s like to be completely broken…. and I know what it’s like when you have no idea about what you are going to do make it through.’
“The beauty of humanity is that suffering can, if we let it, unite and draw us together in a way that nothing else can. It strips us of our titles and crafted exteriors and touches the heart. It has the power to break through masks, if we let it, because it touches who we really are.
And we all need that: Sometimes our hearts need to be exposed. Our weaknesses need to be seen.
Because it is then we realise that we are ALL just fragile humans. It is then we realise that we are ALL more similar than maybe we thought. It is then we know that we ALL face challenges and we ALL feel pain.”
I penned those words in one of the first blog posts that I crafted a year after we lost my Mum. It was a time of processing my thoughts and emotions, whilst trying to connect with others. Thankfully, I had already taken the time to walk myself through that difficult, but rewarding process of increased self-understanding, a few days before I embarked on my next, even bigger, encounter with pain and life changing suffering. I fell from a ladder and sustained a debilitatingspinal CSF Leakthat I still have today over two and a half years later.
It has been through this more recent journey, that has included walking through a different type of grief, that has taken me so much deeper into those same truths I wrote about then. Suffering does touch our hearts profoundly, it reaches to the core of our being. It strips back all the trappings of everyday life and reveals to us the things that really matter. Masks and pretence are thrown away, as we are pulled out of our comfort zones and realise that we cannot do this alone. Those of us who once considered ourselves rather strong and able, suddenly find that we are, in reality, far weaker than we ever imagined.
….. And it is truly humbling.
But that is why there are elements of suffering that we can also embrace, because often it makes us kinder and more compassionate people in the end. It stops us being so judgmental of others – it can actually level the playing field of life – as we truly see that we are ‘ALL just fragile humans.’
“In his delightful little book ‘Off the Sauce’, Lewis Meyer writes: If one could use only one word to describe the feeling of an AA (Alcoholics Anonymous) meeting, it would be love. Love is the only word I know that encompasses friendship, understanding, sympathy, empathy, kindness, honesty, pride, and humility. The kind of love I mean is the kind Jesus had in mind when he said, “Love one another.” Shoes might be shed, attention might be diverted, but there is a closeness between AAs, a closeness you seldom find anywhere. It is the only place Iknow where status means nothing. Nobody fools anybody else. Everyone is here because he or she made a slobbering mess of his or her life and is trying to put the pieces back together again. First things are first here…. I have attended thousands of church meetings, lodge meetings, brotherhood meetings—yet I have never found the kind of love I find at AA. For one small hour the high and mighty descend and the lowly rise. The leveling that results is what people mean when they use the word brotherhood.”
I read these words recently in a wonderful book by Brennan Manning called ‘Abba’s Child, The Cry Of The Heart For Intimate Belonging.’ They are such challenging words to us all. A profound reminder that it is only in the deeply humbling experience of coming to the end of ourselves, and truly realising how weak, broken, messed up, selfish, dysfunctional and ‘not good enough’ we ALL are, in our own ways, and being real and open about it to others. That it brings the ‘levelling’ that is desperately needed to show the deepest love, grace and humility to others too.
When you know the dark reality of ‘reaching the end of yourself’ you do find that ‘we are all more similar than we think.’ We are ALL humans who have weaknesses and insecurities, which become increasingly obvious when we are faced with an extremely difficult season of suffering.
Suffering exposes our many weaknesses, it makes us feel awkward and uncomfortable and can fill us with shame when we shockingly find that we lacked the ability to cope as we thought we should. But sometimes we must simply let it do its work in us. To embrace, rather than run from what it discovers, then face it, be real about it and look at what we can learn and how we can change.This is always the start of a deeper transformation that will make us kinder, more accepting and loving people.
“Not everything that is faced can be changed. But nothing can be changed until it is faced.” – James Baldwin
Do you not love the idea of a world where ‘status means nothing’ and nobody is trying to ‘fool anyone’ anymore with their masks, carefully crafted exteriors and pretence? When we are aware, honest and humble about our weaknesses as well as strengths, so that we can be kind and compassionate about an other’s as well.
“If you think you are too important to help someone, you are only fooling yourself. You are not that important.” – The Bible*
Suffering helps us to see that maybe we were not quite as strong, good or important as we maybe once thought. It helps us to acknowledge and see our weaknesses – if we embrace it properly. Which will, in turn, hopefully take us on a new journey of self awareness. We then find that we have to accept the reality of where we are. Even with its many difficult and uncomfortable thoughts and feelings, as well as its multitude of insecurities and unknowns.
So that even in the midst of it we begin to see that even when we have hit rock bottom, it is not always such a bad thing to experience. Because then I will taste a bit more of that unique humility that is found there, I will know what it’s like to battle darkness face on. I might walk with a new limp where suffering took me down for a while. But ultimately I managed to get up and carry on regardless, even when the scars and wounds are still there.
It’s in the raw vulnerability of those real moments, when we can reach out our hand to another, and our eyes and words will meet in that place of unspoken heart to heart understanding. And it’s there we will find we can walk together through our storms; as equally broken, yet ironically stronger, kinder and wiser humans.
Until one day we find how much it has changed us.
And that is the moment we truly begin to see the wonder, humility and connection that can come from suffering…
… but only IF…
We choose to let it do it’s mysterious work deep within us, by finding the resolve keep seeing the beauty that still resides in its very painful midst.
“The beauty of humanity is that suffering can, if we let it, unite and draw us together in a way that nothing else can. It strips us of our titles and crafted exteriors and touches the heart.”