We all know that life is full of good and hard times. All of us have experienced wonderful moments and very difficult seasons.
Why is it that we rarely ask the question ‘why me?’ for the good parts of life.I rarely think about why I was so privileged to be born into a middle class British family, rather than to a young prostitute, in abject poverty, in the slums of Mumbai. Or why I got to be born healthy with all my body parts as they should be, unlike others who were born disabled.
Yet when hardship and tragedy strikes, these questions often come into our heads and take room in our thoughts.
Why me? Why us? Why this? Why now?
For you, it might be a question asked in your own mind that you simply send out into the unknown. A question that asks why are we all here and what is this life about anyway.
Perhaps it’s a scream from inside stemming from comparison. Why did this happen to me and not them? It’s not fair! I am a better person than them and do more to help others and yet they are fine and I am stuck with this.
Or for those of us who know God, it can be a cry from deep within us – why did this have to happen? I don’t understand! Why should I have to suffer like this? Why should anyone have to suffer? Is it not within God’s power to prevent this? I thought he was supposed to be good!
The questions cause us to have to consider our life, beliefs, perspective and the world more deeply. They can draw us into impossible and exhausting mental gymnastics as we try and work out the intricacies of predestination, fate, acts of good or evil and whether things in life do all happen for a reason, or are purely a random set of circumstances.
But I have learnt the ‘why me’ questions don’t get me anywhere. And they naturally lead to the ‘why not me’ anyway. It’s then just a never-ending cycle of questions that wears us out.
I still believe in and love God deeply. But my accident and ongoing debilitating CSF leak/ Low Pressure Syndrome have naturally raised questions linked to my faith. This has, at times, been a difficult journey of wrestling with the unknowns and uncertainties, considering different answers and perspectives, learning new things, but then ultimately letting go of the need to know and accepting where I am at today.
In the end what has happened, has happened. We cannot change the past – all we can do is learn from it and move forward. Whatever that moving forward may look like.
There is undeniably pain and suffering in the world. Whatever you believe, you cannot deny that fact. So perhaps the question should not so much be;
Why is this happening?
Which we can never completely answer and can rarely control – unless our problems are self inflicted and/ or could be self resolved.
But instead perhaps we need to change the question to focus on;
What can I DO with my suffering?
It shifts the focus from getting lost in the complexities of unanswerable questions and things we cannot currently change and puts the focus back onto what we do have more control over.
Our RESPONSE to suffering.
Can I still find meaning and purpose here?
“Suffering can be what economists call a “frozen asset.” It may not look remotely like an asset at the time, but gradually we can find meaning in it, an enduring meaning that will help to transform the pain.”– Philip Yancey
“Today is mine. Tomorrow is none of my business. If I peer anxiously into the fog of the future, I will strain my spiritual eyes so that I will not see clearly what is required of me now.” – Elisabeth Elliot
That is the lesson I am trying to live out every day at the moment. To embrace each day as a gift. I am who I am and can only do what I can do in this moment.
If I am always waiting till tomorrow, I will not fully embrace today.
I have been unwell for 2 years from a spinal CSF leak. Every day of that 2 years I have felt unwell. Some days more than others. But each day is full of challenge.
I never imagined how hard it is to live like this. How deep you have to keep digging to stay sane. It is definitely one of those things you can only fully understand once you have experienced it.
It’s tough.
Every day is a battle of sorts.
Some days we have to fight harder than others.
Persevering can just be so very exhausting.
There are moments it’s hard to muster up the strength to face the new day.
But what choice do we have other than to keep on taking hold of each new day and finding the opportunities here?
Some days are exhausting. Others go that bit more smoothly. Some are just plain tough. Others have such beautiful moments within them.
But whatever the day brings I have to keep on walking forwards. Placing one foot in front of the other. Accepting the limitations whilst refusing to let them take me over.
If I am always waiting till tomorrow, I will not fully embrace today.
A big lesson I have had to learn is the ability to LET GO. Everyone reaches a stage on their journey with chronic illness or any other long term trial in life where you have to accept your current reality, let go of your old ‘normal’ life and choose to make the most of your life and what it looks like HERE today.
We can still hope for a better future, but not at the expense of living today.
Letting go is not an easy process. It’s a bit like grief – you can go through various stages to reach that point of acceptance. It is often painful. It’s choosing to say goodbye to who you once were and accepting the reality of who you are now. Not knowing when and if things will improve.
It’s the day you decide that you have to keep living within the uncertainties, the limbo and make the most of the reality in front of you now.
It’s choosing to keep going whatever barriers are thrown up before you. To get up when you fall down and to gather up the pieces when you feel broken again and again. To choose to keep on living.
It’s a letting go of the old to discover and embrace the new.
My faith helps a lot with the process of letting go. Over the years I have learnt the daily discipline of surrender, of saying to God – I am letting go of my life and future, please take control because I can’t do this alone. It is allowing His love to be my strength in weakness, my peace in the midst of the storm and allowing my struggles to develop in me more compassion and love towards those around me.
This process helps to keep my heart tender towards others rather than my heart becoming increasingly hard. It’s about keeping my perspective right so that negativity, bitterness or blame don’t take root and destroy me. A daily reminder to keep believing that good and positive things can come out of times of pain. A decision to look outside of myself each day to see what what I can still do here. To remember that there are plenty of others walking a similar or even more difficult journey than me. People I can encourage and walk alongside. Taking hold of new opportunities even within the difficulties.
There is a freedom that comes in letting go of the things we can’t change and choosing to take control of the things we can.
So each day I have to choose to let go of yesterday and the unknowns of tomorrow. I have to see what I can do today and embrace it. Not comparing it to what I used to be able to do or what others around me can do. If I look around me I will often see those who continue in their ‘normal lives’, and I can forget the many for whom – like me – their old normal is becoming a distant memory. The ones that choose to stand up, amidst the pain, to face another day and to craft out a new normal.
A normal that although perhaps tainted by brokenness, cracks and wounds that might still feel quite raw, has the potential to be even more beautiful that what went before. Because we now know how to just about weather the never ending storm and LET GO in the midst of it. To craft out new meaning and purpose that has to go so much deeper than ever before.
We have to fix our eyes on our own path whilst doing what we can to help, support and walk alongside others as well. We can walk our unique paths – with others – whilst not getting distracted or fixated on the differences between us. Instead we can choose to support one another and learn from what is similar and what is different. Celebrating the good times and weeping over the hard times together.
One thing this journey has taught me is that..
once you know what it feels like to reach the utter end of yourself
when you have watched your life be thrown up in the air and fall into pieces on the floor around you
…your heart becomes more tender to feel others pain too.
You can then reach out to another and together you can find a way to LET GO in the midst of the storm. We can embrace who we can be and what we can do today rather than always waiting for the storm to clear.
So each day I will do the best I can to embrace the here and now regardless of the unknowns, uncertainties and future battles. With the resolve to be the best and do the best I can in the midst of all the limitations.
And just let go of the rest.
“God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. Living one day at a time; enjoying one moment at a time…” – Reinhold Niebuhr
‘Shame derives its power from being unspeakable…. If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to whither.” – Brene Brown
Over the summer I read Brene Brown’s fabulous book ‘Daring Greatly’.The book follows on from her famous TEDTalk on vulnerability that had previously inspired me to write this blog post on the power of vulnerability.
The full title of the book is ‘Daring Greatly:How the courage to be vulnerable transforms the way we live, love, parent and lead.’ It encourages us to dare to be honest about who we really are, rather than trying to hide our weakness. It teaches that vulnerability helps us to live more ‘wholeheartedly’, connect more with others and that it helps us to overcome the destructive burden of ‘shame’ we all carry.
Her book really got me thinking about this concept of shame. It is not something we often think about.
I have been part of the Christian church all my life so I am used to hearing the word shame. We believe it is something destructive that we can overcome and that the grace provided by Jesus’ death and resurrection can break us free from its grasp.
And yet, this book caused me to really reflect on shame; what it is and what it really means.It inspired me to consider these questions;
Where does shame have a hold on my life? How does shame effect my thoughts and actions? How might shame be damaging my wellbeing & relationships?
What is shame?
Words we often connect or use interchangeably with shame are words like: embarrassed or humiliated. It can manifest as feelings of inadequacy, guilt or regret. It’s something we often hide and cover up. We might self medicate to avoid thinking about it. We dread people seeing it.
And yet although shame is often seen as one and the same as guilt, I have come to see that there is a distinctive difference.
One of the main differences between shame & guilt is that guilt is the feeling of embarrassment or regret about something YOU HAVE DONE WRONG. We can feel shame, on the other hand, even when we have NOT DONE ANYTHING WRONG.
Shame is more connected to who WE ARE and how OTHERS PERCEIVE US.
“It’s a painful feeling about how we appear to others (and to ourselves) and doesn’t necessarily depend on our having done anything.” – Joseph Burgo
The more I thought about shame and how it manifests in my life, the more I became aware that it is intrinsically linked to the struggles I face at the moment. I began to see how shame had got a hold on me and particularly how it has effected me over the past year or so.
Finally I began to see and recognise that;
I FEEL ASHAMED THAT I AM BATTLING A CHRONIC ILLNESS!
There we go I have said it. It’s out in the open…
I feel ashamed that I am ill. I feel ashamed that it has gone on so long. I feel ashamed that I can’t seem to get well. I feel ashamed that I cannot work and be busy like I used to.
I feel embarrassed to be sick!
When I decided to speak up and write about feeling ashamed of being ill, it led me to google the words; ‘the shame of chronic illness.’ Through that search I found two insightful blog posts by a lady called Angelika Byczkowski in which she shares something of her battles with the chronic connective tissue disorder – Ehlers-Danlos syndrome (EDS).
She writes so beautifully about the humbling journey those with chronic illness and pain are forced to take;
“When I recently read the phrase, “I’m embarrassed to be sick,” it made my stomach clench and my breath catch. That’s exactly what I’ve been feeling….. I am ashamed of being sick…. …. If all the people not yet affected by chronic illness acknowledged all the undeserved pain in this world, they would be forced to confront their own vulnerability to the same forces. Instead, we all prefer to believe we have the power to prevent such disasters in our own lives. Sometimes I even catch myself thinking, “If you’re so smart, why did you let this happen to you?”
Those words were so revealing to my own heart. I have begun to see that I feel like a ‘failure’ for being sick. I feel like – ‘if I was only a bit stronger or wiser, made better choices, if only a bit more positive, if only I had more faith …. surely I could have overcome this sooner?’
Such thoughts often taunt me and drag me into a dark and negative pattern, which was particularly bad at Christmas, where I blame myself and feel responsible for still being ill.
It’s so humiliating to be so unwell and in pain long term.
Angelica highlights this so beautifully in another post called ‘The subtle arrogance of good health’. She writes about how many of us have fallen for the trap we set ourselves, because before we got ill we carried a form of arrogance at being healthy .
“My attitude was the typical thoughtless “arrogance of good health,” the attitude of those who can’t even imagine what happens when a body stops functioning properly. This arrogance knows only the kind of pain that heals, the kind of sickness that is cured.”
As I read those words I too knew it was talking about me. Before I got ill, I had carried the ‘arrogance of good health.’ I had believed that I was strong enough to shake it off when others couldn’t, because that was all I knew.
I was not the ‘type’ who would succumb to its chains. I was always so healthy and surely I could overcome anything thrown at me right? Surely my faith and positive mindset would win?
And then one day in January 2015 I fell off a step ladder and entered the world of chronic invisible illness and pain. I acquired a debilitating spinal CSF leak and brain injury that I haven’t YET overcome. I have been unwell for 20 months. Each and everyday I battle through chronic pain, physical & mental fatigue, a foggy brain, barriers to treatment and the challenges of not ‘being able’ to heal up, get well and get free.
And honestly, I feel ashamed on so many levels!!
I feel ashamedthat I have now become one of those people with ‘chronic pain’ and ‘chronic illness.’
I actually hate using the word ‘chronic’ at all! (Which is revealing of the sterotypes I accepted before).
I feel ashamed to tell you that I feel weaker than I ever imagined possible; physically, mentally and spiritually.
I feel ashamed that my ‘old’ positivity has taken a massive hit and most days I battle overwhelming feelings of despair at the thought of not getting better.
I feel ashamed that I broke down mentally at Christmas, exhausted and with nothing left for the fight, and seriously considered ending my life. I feel ashamed that the same ‘selfish’ thought has returned at times since then, although thankfully not to the same depth.
“In my view, suicide is not really a wish for life to end.’ What is it then?’ It is the only way a powerless person can find to make everybody else look away from his shame. The wish is not to die, but to hide.”– Orson Scott Card
I feel ashamedevery time I have to update people on where I am at, and that I have to tell them I am still not well, it’s got worse and it is not yet over.
I feel ashamedwhen I can’t tell you that I have finished the fight, overcome, won and beaten this dreadful condition.
I feel ashamedthat I cannot yet testify to the fact that I am now fully healed and whole, even though I believe in a loving creator God and Father who can do the impossible.
“O my God, I trust in You; Let me not be ashamed;” Psalms 25:2 – The Bible
I feel ashamedtelling doctors that I can’t seem to get better and hope that they will see past the ‘chronic pain’ patient with the unusual condition and know that it’s not ‘all in my head’ so that I can continue to get treatment.
I feel ashamed when the scans are clear and don’t show any evidence of a CSF leak, when the treatment I receive doesn’t ‘fix’ me or when my symptoms don’t always fit with the diagnosis.
Each day this drags on the shame gets worse. Each day the shame is becoming almost as much of a burden as the illness itself. Each day the shame is debilitating me and making me feel small. Each day the shame is robbing me of my voice and tempting me to retreat from the world.
And it has to stop!
I HAVE TO BREAK FREE!
So today I am making the ‘unspeakable’ speakable; for myself and the multitudes who also travel the dark road of chronic illness and pain.
I am speaking out my shame so that it can no longer chain me up with its lies.I am choosing to acknowledge the space it has taken up in my thoughts; so that we can tear down its strongholds together.
Today I chose vulnerability; to speak the unspoken, so that you and I won’t have to suffer again in silence.
Today I choose to fight shame so that even though this condition taunts me daily, trying to persuade me I can never be free; it doesn’t have to define everything I am, do, and my relationships with those around me.
So today, whether you are battling chronic illness and pain or know someone who is; I pray that together we can tear down the ‘chronic pain’ stereotypes that perhaps we also once secretly adhered to ourselves, and no longer allow it’s shame to rule our and others lives.
“If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to whither.” – Brene Brown
What do you feel ashamed of? We all carry shame in some form. Please feel free to comment below – if we can speak it then perhaps together we can beat it!
Here is my new summary video of my whole medical journey https://youtu.be/cKECz_fCnFw as well as footage of my January/ February 2021 adhesive arachnoiditis relapse/ flare and treatment with IV Steroids. To see my daily video diaries from this time please see my YouTube channel: https://www.youtube.com/channel/UC9ZkCy9B_IpeaGrXd0CEgow
Becky Hill's Blog 